tag:theconversation.com,2011:/uk/topics/organ-donation-1337/articlesOrgan donation – The Conversation2023-08-10T12:40:24Ztag:theconversation.com,2011:article/2036252023-08-10T12:40:24Z2023-08-10T12:40:24ZLab-grown ‘ghost hearts’ work to solve organ transplant shortage by combining a cleaned-out pig heart with a patient’s own stem cells<figure><img src="https://images.theconversation.com/files/537844/original/file-20230717-245914-zcsxaf.png?ixlib=rb-1.1.0&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">A 'ghost heart' is a pig's heart prepared so that it can be transplanted into people.</span> <span class="attribution"><span class="source">Provided by Doris Taylor</span></span></figcaption></figure><p><em>Heart disease is the leading cause of death worldwide. The World Health Organization estimates that <a href="https://www.who.int/health-topics/cardiovascular-diseases#tab=tab_1">17.9 million people</a> lose their lives to it each year, <a href="https://www.who.int/news-room/fact-sheets/detail/cardiovascular-diseases-(cvds)">accounting for</a> 32% of global deaths.</em> </p>
<p><em><a href="https://scholar.google.com/citations?user=-OixKmwAAAAJ&hl=en">Doris Taylor</a> is a scientist working in regenerative medicine and tissue engineering. Her work has focused on creating personalized functioning human hearts in a lab that could rule out the need for donors. Taylor has dubbed these hearts “ghost hearts.”</em> </p>
<p><em>In March, Taylor spoke at the 2023 <a href="https://www.imaginesolutionsconference.com/">Imagine Solutions Conference</a> in Naples, Florida, about the ghost heart and her journey to creating it. Below are edited answers to questions from The Conversation. Taylor is also featured on <a href="https://bit.ly/3KyiYe5">Guy Kawasaki’s Remarkable People podcast</a>.</em></p>
<h2>What are the biggest challenges facing organ donations today?</h2>
<p>Currently, patients in need of a heart transplant need to join a waitlist, and hearts become available when someone else has died. Because there are not enough hearts to go around, only the very sick are put on the waitlist. The U.S. transplants about <a href="https://unos.org/news/in-focus/2022-heart-transplants-steep-increases-in-transplants-from-dcd-donors/">11 hearts a day</a>, and on a given day there are <a href="https://www.organdonor.gov/learn/organ-donation-statistics/detailed-description#fig1">more than 3,000 people</a> waiting for a heart. </p>
<p>Even when organs are successfully transplanted, it isn’t a Hollywood fairy-tale ending. A person receiving an organ transplant essentially trades one disease for other medical complications and diseases. Toxic drugs necessary to prevent rejection can cause <a href="https://doi.org/10.5500/wjt.v12.i3.42">high blood pressure</a> <a href="https://doi.org/10.1210/er.2015-1084">diabetes</a>, <a href="https://doi.org/10.1016/j.bulcan.2016.12.008">cancer</a> and <a href="https://doi.org/10.1053/j.ackd.2021.10.010">kidney failure</a>. These are serious medical issues that also affect people emotionally, financially and physically. </p>
<p><a href="https://doi.org/10.1371/journal.pone.0263210">About 18%</a> of people die in the first year after a transplant. </p>
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<figcaption><span class="caption">Doris Taylor speaks at the 2023 Imagine Solutions Conference.</span></figcaption>
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<h2>What is the so-called “ghost heart”? How does it work?</h2>
<p>The <a href="https://www.cnn.com/2022/06/01/health/ghost-heart-life-itself-wellness/index.html">ghost heart</a> is a heart whose cells have been removed. All that remains is the heart framework, or scaffolding. It’s called a ghost heart because removing the cells causes the heart to turn from red to white. A human heart wouldn’t work as a scaffold because so few are available to work with.</p>
<p>So my team and I went with the next best thing: a pig heart. Pig hearts are <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4181683/">similar to human hearts</a> in terms of their size and structure. Both have four chambers – two atria and two ventricles – responsible for pumping blood. And structures from pig hearts such as <a href="https://www.health.harvard.edu/heart-health/valve-replacement-mechanical-or-tissue#">valves have been used in humans</a> safely.</p>
<p>To remove the cells, the pig heart is gently washed through its blood vessels with a mild detergent to remove the cells. This process is called <a href="https://doi.org/10.1038/nprot.2014.097">perfusion decellurization</a>. The cell-free heart can then be seeded with new cells – in this case, a patient’s cells – thus forming a personalized heart.</p>
<h2>What role do stem cells play in creating a heart?</h2>
<p>If you lined up the cells needed for an average-size <a href="https://journals.lww.com/amjforensicmedicine/Abstract/2012/12000/Normal_Organ_Weights_in_Men__Part_I_The_Heart.21.aspx">350-gram human heart</a>, they would stretch for 41,000 miles. Stacked on top of one another, they would amount to 2 billion lines of cells, or enough to fill seven movie screens. But heart cells don’t divide. If they did, hearts could likely repair themselves. </p>
<p>Stem cells, on the other hand, do divide. They can also form into specialized cells – in this case, heart cells. Nobel Prize laureate Dr. Shinya Yamanaka discovered a method to make <a href="https://www.nobelprize.org/prizes/medicine/2012/yamanaka/facts/">stem cells out of blood or skin cells</a> from an adult. My team and I employed this method to obtain stem cells, then grew those cells into billions. After that, the team used chemicals to “differentiate” them into heart cells. We employed this method to obtain billions and billions of heart cells.</p>
<p>The first time I saw heart cells beating in a dish it was life-changing. But while the cells are alive and beat, they are not a heart. To be a heart, these cells need to be placed into a form that lets them become a unified organ, to mature and to be able to pump blood. In a human body, this happens during development; we had to reproduce that capacity in the lab.</p>
<h2>In 2022, a pig heart that had been genetically engineered to reduce rejection and improve acceptance was transplanted into a human. Why is it better to build a heart from scratch using pig scaffolding instead?</h2>
<p>Let me be clear: Any heart is better than no heart. And <a href="https://theconversation.com/organs-from-genetically-engineered-pigs-may-help-shorten-the-transplant-wait-list-175893">xenotransplantation</a> – the process by which nonhuman animal organs are transplanted into humans – opened doors for all scientists in this field. </p>
<p><a href="https://www.weforum.org/agenda/2022/01/gene-edited-pig-heart-transplanted-into-human-patient/">The patient received</a> a pig heart that had been gene-edited. Human genes were added, and some pig genes were removed, but the heart still essentially comprised pig cells within a pig scaffold. As a result, the individual had to take anti-rejection drugs that suppressed the immune system. And, unbeknownst to doctors, the heart was <a href="https://www.newscientist.com/article/2319108-man-who-received-pig-heart-transplant-has-died-after-pig-virus-found/">carrying a pig virus</a> that ultimately killed the patient two months following the transplant.</p>
<p>I believe these sorts of problems are avoided with the ghost heart. My team removes the pig cellular material from the scaffold, leaving only the protein structure and blood vessel channels behind. The proteins are so similar to human scaffold proteins they that don’t appear to cause rejection.</p>
<h2>What are the biggest challenges facing the ghost heart effort?</h2>
<p>My team and I have encountered two major hurdles. The first is the time and cost it takes to <a href="https://doi.org/10.1159/000511382">grow the cells</a>.</p>
<p>The second is enabling the <a href="https://doi.org/10.1159/000511382">heart to mature</a> once the cells are delivered into it – all while maintaining sterility in the absence of any antibiotics. My lab and our partners have had to essentially recreate the heart outside of the body and build the equivalent of an artificial human body that provides food, temperature control, oxygen and other nutrients as well as a blood pressure and artificial blood flow – we call it a biocradle – in which to place the heart. We have to train the immature heart cells to work together even as we are coaxing them to grow strong enough to pump blood; figure out how to feed them and get oxygen to them without lungs; and keep them sterile without an immune system. It’s a huge endeavor. </p>
<p>I liken it to a symphony in which each section has to come in at just the right time to create a beautiful, complex song – but if one piece isn’t ready, the whole thing falls apart. My job is to be the conductor. </p>
<h2>Where do you see the future of organ donations in 30 years?</h2>
<p>Today, organ donation is lagging behind need. Scientists are aiming to change that by increasing the number of donors, making more organs available by rejuvenating those that can’t be used and by building new technology – as my team and I are doing with the ghost heart. But it’s more than supply and demand. Access is not equal. In fact, organ transplant is a huge health inequity issue. Today, the organ transplant system fails people of color. For example, African Americans have a <a href="https://www.aamc.org/news-insights/how-our-organ-transplant-system-fails-people-color">higher rate of heart failure</a> but are <a href="https://www.heart.org/en/news/2021/08/25/despite-progress-black-patients-still-less-likely-to-get-heart-transplants">less likely</a> to receive hearts. </p>
<p>As science evolves, scientists have the opportunity to make organs accessible and to deliver organs that don’t require expensive toxic drugs. I look forward to that day and work daily to help create it. </p>
<p>Most people know months to years in advance that they need a transplant. In general, the current <a href="https://www.heart.org/en/news/2018/11/12/wait-times-for-a-donor-heart-may-vary-by-race">wait for a heart</a> is about a year for white Americans but longer for African Americans, while the data for Latinos and Asians is less clear. For other organs, the wait can be three to five years. Not only is that a long time – it is an inequitable time that needs to change. </p>
<p>Building a heart is a 24/7, 365-day-a-year effort. A dedicated team and I, along with supporters, have the opportunity to build hearts earlier and change heart transplants from emergency procedures to planned hospital surgeries – and to do so equitably.</p><img src="https://counter.theconversation.com/content/203625/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Doris Taylor works for Organamet Bio, Inc and owns shares in Miromatrix Medical. She receives funding from ARMI BioFAB. She is affiliated with Organamet Bio, Inc; and owns shares in Miromatrix Medical, Inc. </span></em></p>Scientist Doris Taylor explains how she and her team are creating bioengineered human hearts in their lab with the goal of one day eliminating the need for heart transplants.Doris Taylor, Regenerative Medicine Lecturer, University of New HampshireLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1711922023-06-30T12:37:43Z2023-06-30T12:37:43ZIs it legal to sell human remains?<figure><img src="https://images.theconversation.com/files/534894/original/file-20230629-29-fif855.jpg?ixlib=rb-1.1.0&rect=9%2C15%2C2108%2C1393&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">The handling and disposition of human bodies raises all sorts of ethical and legal questions.</span> <span class="attribution"><a class="source" href="https://www.gettyimages.com/detail/photo/coffin-on-stage-royalty-free-image/85637547?phrase=funeral&adppopup=true">Jupiterimages/The Image Bank via Getty Images</a></span></figcaption></figure><p>Four individuals were <a href="https://media.wbur.org/wp/2023/06/morgue-indictment.pdf">charged with federal crimes</a> in June 2023 related to the “unlawful transport” across state lines of human remains taken from the Harvard Medical School morgue. This indictment was part of a larger effort by the Department of Justice to <a href="https://www.justice.gov/usao-mdpa/pr/six-charged-trafficking-stolen-human-remains">shut down a national network</a> of people trafficking in human remains. </p>
<p>Cedric Lodge, who had been the morgue manager <a href="http://hms.harvard.edu/news-events/anatomical-gift-program-resources/frequently-asked-questions">until his firing in May</a>, was accused of removing human remains that had been donated to the medical school. According to <a href="https://media.wbur.org/wp/2023/06/morgue-indictment.pdf">the indictment</a>, he and his wife, Denise Lodge, shipped those remains to Katrina MacLean, the owner of a store called Kat’s Creepy Creations, and Joshua Taylor, an individual living in Pennsylvania. Taylor transferred nearly US$40,000 to the Lodges via PayPal, with memos that included “head number 7” and “braiiiiiins.”</p>
<p>As a scholar whose research is centered on the <a href="https://law.wfu.edu/faculty/profile/marshtd/">laws regarding the status, treatment and disposition of human remains</a>, I am often asked about the legality and ethics of <a href="https://www.huffpost.com/entry/laws-permitting-human-remains_b_1769082">selling bodies</a>, especially when stories like the <a href="https://www.boston.com/news/crime/2023/06/16/is-it-legal-to-sell-human-remains-harvard-morgue-scandal-raises-questions/">Harvard morgue case</a> or <a href="https://abcnews.go.com/US/tiktok-user-sells-human-bones-ignites-ethical-debate/story?id=80541972">a TikTok user selling human bones</a> begin to circulate.</p>
<p>My answers often surprise people.</p>
<h2>State by state</h2>
<p>It is not illegal to sell human remains under federal law. That’s why the defendants in the Harvard Medical School case were <a href="https://www.justice.gov/usao-mdpa/pr/six-charged-trafficking-stolen-human-remains">charged with interstate transport of stolen goods</a>, rather than “trafficking human remains.” </p>
<p>There is actually very little federal law regarding the dead. The most significant is the Federal Trade Commission’s <a href="https://www.ftc.gov/news-events/topics/truth-advertising/funeral-rule">Funeral Rule</a>, which requires funeral homes to provide certain disclosures to consumers.</p>
<p>Instead, the vast majority of law respecting the dead is state law, which varies significantly.</p>
<p>By my count, the sale of human remains is broadly and expressly illegal in only eight states: <a href="http://www.leg.state.fl.us/Statutes/index.cfm?App_mode=Display_Statute&Search_String=&URL=0800-0899/0872/Sections/0872.01.html#:%7E:text=View%20Entire%20Chapter,775.082%20or%20s.">Florida</a>, <a href="https://codes.findlaw.com/ga/title-31-health/ga-code-sect-31-21-41/">Georgia</a>, <a href="https://malegislature.gov/Laws/GeneralLaws/PartIV/TitleI/Chapter272/Section72">Massachusetts</a>, <a href="https://www.revisor.mo.gov/main/OneSection.aspx?section=194.410&bid=10000&hl=#:%7E:text=194.410.,commits%20a%20class%20E%20felony.">Missouri</a>, <a href="https://www.revisor.mo.gov/main/OneSection.aspx?section=194.410&bid=10000&hl=#:%7E:text=194.410.,commits%20a%20class%20E%20felony.">New Hampshire</a>, <a href="https://www.scstatehouse.gov/code/t44c043.php">South Carolina</a>, <a href="https://casetext.com/statute/texas-codes/penal-code/title-9-offenses-against-public-order-and-decency/chapter-42-disorderly-conduct-and-related-offenses/section-4208-abuse-of-corpse#:%7E:text=Section%2042.08%20%2D%20Abuse%20of%20Corpse%20(a)%20A%20person%20commits,illegally%20disinterred%3B%20(3)%20sells">Texas</a> and <a href="https://law.lis.virginia.gov/vacode/title32.1/chapter8/section32.1-303/">Virginia</a>. </p>
<p>Perhaps one reason the Harvard morgue case is being handled by the Department of Justice is that although selling human remains is illegal in Massachusetts and New Hampshire, it does not violate state law in Pennsylvania, where some of the activity took place.</p>
<p>In more than two dozen other states, <a href="https://www.lawyersandjudges.com/products/the-law-of-human-remains">it is illegal to sell human remains</a> only under certain circumstances. A number of these states make it expressly illegal to sell human remains or organs that were donated for anatomical study, transplantation or medical therapy. </p>
<p>Most commonly, it is illegal to sell human remains that have been unlawfully removed from a place of burial. For example, in <a href="https://www.ncleg.gov/EnactedLegislation/Statutes/PDF/ByArticle/Chapter_70/Article_3.pdf">North Carolina</a>, it is a crime to “knowingly exhibit or sell any human skeletal remains from unmarked burials.” However, this specific phrasing means that the North Carolina law could not be applied to a situation like the Harvard case, where the body was obtained from a morgue. Nor could it be applied to the sale of body parts other than skeletal remains.</p>
<h2>Up for sale</h2>
<p>In fact, it is surprisingly easy to purchase human remains in the United States, even in states where such sales are expressly illegal. There are brick-and-mortar stores, like <a href="https://www.cbsnews.com/boston/news/katrina-maclean-peabody-creepy-dolls-store-charged-harvard-morgue-body-part-theft/">Kat’s Creepy Creations</a> in Massachusetts, which sell skeletal remains. </p>
<p>But increasingly, retail traffic in human remains <a href="https://doi.org/10.1111/1556-4029.13147">takes place online</a>. The sales of human remains have been banned on Etsy and eBay <a href="https://money.cnn.com/2012/08/10/technology/etsy-bans-drugs/index.html">since 2012</a> <a href="https://www.buzzfeednews.com/article/danvergano/skull-sales">and 2016</a>, respectively, but social networks like Facebook are <a href="https://www.livescience.com/human-bone-trade-facebook.html">rife with groups</a> where body parts are sold and traded. One of the defendants in the Harvard Medical School case <a href="https://www.newsweek.com/woman-posted-human-skull-instagram-before-harvard-morgue-indictment-1807078">advertised at least one skull on Instagram</a>.</p>
<p>It is difficult to determine how human remains end up in the retail stream because most body parts for sale have been de-identified. In other words, the seller does not name the deceased person whose remains are being sold and usually does not reveal how the remains were obtained – and there is no law requiring them to do so.</p>
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<a href="https://images.theconversation.com/files/534901/original/file-20230629-26-9mgo4.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="A man in a green uniform and cap walks around a tombstone with a small fence around it in a wooded area." src="https://images.theconversation.com/files/534901/original/file-20230629-26-9mgo4.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/534901/original/file-20230629-26-9mgo4.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=397&fit=crop&dpr=1 600w, https://images.theconversation.com/files/534901/original/file-20230629-26-9mgo4.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=397&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/534901/original/file-20230629-26-9mgo4.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=397&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/534901/original/file-20230629-26-9mgo4.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=499&fit=crop&dpr=1 754w, https://images.theconversation.com/files/534901/original/file-20230629-26-9mgo4.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=499&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/534901/original/file-20230629-26-9mgo4.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=499&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
<figcaption>
<span class="caption">A historian inspects a Civil War-era grave dug up by grave robbers on National Park Service property in Maryland.</span>
<span class="attribution"><a class="source" href="https://www.gettyimages.com/detail/news-photo/wheeler8-date-5-31-06-photographer-katherine-frey-the-news-photo/103800735?adppopup=true">Katherine Frey/The The Washington Post via Getty Images</a></span>
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<p>There are a few explicitly illegal methods of obtaining human remains in the U.S. Grave robbery, for example, <a href="https://www.lawyersandjudges.com/products/the-law-of-human-remains?_pos=2&_sid=b1c0b1545&_ss=r&variant=6027975619">is specifically outlawed</a> in nearly every state. Digging up corpses was a <a href="https://www.smithsonianmag.com/history/in-need-cadavers-19th-century-medical-students-raided-baltimores-graves-180970629/">significant problem</a> in the 1800s, when medical schools first began <a href="https://theconversation.com/medical-students-honor-body-donors-through-words-deeds-and-ceremonies-208168">to teach students through anatomical dissection</a>.</p>
<p>When a person dies in the U.S., there are limited legal options for the disposition of their body, which effectively prevents an individual from arranging to sell their own remains. </p>
<p>In every state, remains may be buried, entombed, cremated, donated to science or removed from the state or order to be lawfully disposed of elsewhere. More than half of states have legalized a process called <a href="https://www.cremationassociation.org/page/alkalinehydrolysis">alkaline hydrolysis</a>, also known as <a href="https://www.cremationassociation.org/blogpost/776820/313847/What-do-you-know-about-Alkaline-Hydrolysis">aquamation or water cremation</a>, which dissolves the body in a base solution. In seven states, remains may be disposed of via <a href="https://connectingdirectors.com/65987-nevada-legalizes-nor">natural organic reduction</a>, also called <a href="https://www.popsci.com/environment/composting-body-burial/">human composting</a>.</p>
<h2>Final gift</h2>
<p>If an individual or their family donates remains to science, typically a nonprofit organization or university takes possession of the remains.</p>
<p>The use of those remains varies widely. A medical school like Harvard has an <a href="https://meded.hms.harvard.edu/anatomical-gift-program">anatomical donation program</a> to obtain intact cadavers to be used in gross anatomy labs and other teaching settings. </p>
<p>However, people sometimes donate to a non-transplant tissue bank, often called “body brokers.” Given the high costs of funeral arrangements in the U.S., some families donate a loved one’s remains to body brokers, who dispose of remains without cost to the family. </p>
<p>Bluntly speaking, body brokers carve up human remains and distribute them to be used in medical therapy or research, with little regulation – the subject of a <a href="https://www.reuters.com/investigates/special-report/usa-bodies-brokers/">2017 Reuters investigation</a>. They do charge for processing and transporting human remains, and one such company, Science Care, <a href="https://www.reuters.com/investigates/special-report/usa-bodies-science/">generated $27 million in revenue in 2017</a>.</p>
<p>Body brokers are <a href="https://nfda.org/news/media-center/nfda-news-releases/id/7475/congress-takes-significant-step-to-regulate-body-brokers">more controversial</a> than university anatomical donation programs, but in both cases, remains are used for medical education or research. The ultimate disposition of remains donated to science is typically cremation.</p>
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<a href="https://images.theconversation.com/files/534896/original/file-20230629-25452-4u7cgg.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="A body lies covered by a white sheet on a metal table in a white and yellow lab-like room." src="https://images.theconversation.com/files/534896/original/file-20230629-25452-4u7cgg.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/534896/original/file-20230629-25452-4u7cgg.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=389&fit=crop&dpr=1 600w, https://images.theconversation.com/files/534896/original/file-20230629-25452-4u7cgg.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=389&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/534896/original/file-20230629-25452-4u7cgg.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=389&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/534896/original/file-20230629-25452-4u7cgg.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=489&fit=crop&dpr=1 754w, https://images.theconversation.com/files/534896/original/file-20230629-25452-4u7cgg.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=489&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/534896/original/file-20230629-25452-4u7cgg.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=489&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
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<span class="caption">Human remains donated to science are meant to be disposed of with respect.</span>
<span class="attribution"><a class="source" href="https://www.gettyimages.com/detail/photo/pathology-department-in-a-hospital-royalty-free-image/539882937?phrase=morgue&adppopup=true">Team Static/fStop via Getty Images</a></span>
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<h2>Seeking justice</h2>
<p>If bodies donated to science are not <a href="https://nfda.org/news/media-center/nfda-news-releases/id/7475/congress-takes-significant-step-to-regulate-body-brokers">treated with the respect and dignity</a> that the donors were promised by the recipient institution, as in the Harvard Medical School case, there are several possible legal options. </p>
<p>First, there could be federal or state criminal charges in the small number of states that broadly outlaw the sale of human remains. </p>
<p>Second, 30 states outlaw the mistreatment or mutilation of human remains. These criminal laws are generally referred to as “<a href="https://funerallaw.typepad.com/blog/2015/10/does-the-law-limit-what-you-can-do-with-human-remains-yes-understanding-abuse-of-corpse-laws.html">abuse of corpse” statutes</a>.</p>
<p>Finally, the families of the donors may have a private cause of action against the recipient institution or against people who took the remains without permission. There are <a href="https://www.ali.org/projects/show/torts-miscellaneous-provisions/">two possible tort claims</a> that families could bring: interference with the family’s right to respectfully dispose of the remains, known formally as “interference with the right of sepulcher,” and infliction of emotional harm based on mistreatment of human remains.</p>
<p>I have yet to encounter a person who is not horrified by the treatment of the bodies donated to Harvard Medical School and then diverted into curiosity shops and private collections, especially when I explain that such activities are not clearly illegal in every state. </p>
<p>Respectful treatment of human remains, and of the loved ones they leave behind, appears to be a universal value. Yet there is a clear mismatch between these social norms and the law – for now.</p><img src="https://counter.theconversation.com/content/171192/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Tanya D. Marsh does not work for, consult, own shares in or receive funding from any company or organization that would benefit from this article, and has disclosed no relevant affiliations beyond their academic appointment.</span></em></p>The short answer: It’s complicated – and depends, in part, where you live.Tanya D. Marsh, Professor of Law, Wake Forest UniversityLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1859162023-06-22T14:25:13Z2023-06-22T14:25:13ZHuman organs for transplant: 5 steps Africa must take to improve the supply chain<figure><img src="https://images.theconversation.com/files/471369/original/file-20220628-20-p4rpam.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Lack of a proper storage and transport medium is a challenge to organ donation in Africa. </span> <span class="attribution"><span class="source">Sean Gallup/Getty Images</span></span></figcaption></figure><p>Medical science has made tremendous advancements over the past 70 years. One of these is the transplant of human organs from one person to another. The first transplant – a kidney – <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8682823/">was in the US</a> in 1954.</p>
<p>Since then, organ transplants have become an <a href="https://latinaer.springeropen.com/articles/10.1186/s40503-019-0068-2">option</a> in a variety of medical cases. Most donated organs come from people who have already died, but people can still give some organs and tissue while they are alive. </p>
<p>The global demand for human organs for transplant has <a href="http://www.transplant-observatory.org/download/2016-activity-data-report/">grown by 7.2%</a> since 2015. That has surpassed supply. The average wait time for organ transplants in developed countries like the US is between two and six years. This results in the loss of <a href="https://www.degruyter.com/document/doi/10.1515/9780804784641/html">over 10,000 lives</a> each year. And in India, every year <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9886047/#:%7E:text=Although%20India%20holds%20second%20place,to%20the%20unavailability%20of%20organs.">500,000 people</a> die because there are not enough organs available. </p>
<p>In sub-Saharan African countries, there has been a <a href="https://dailytrust.com/grey-areas-organ-transplantation-in-nigeria">steady rise</a> in the demand for organ transplantation, with no corresponding increase in the number of <a href="http://www.scielo.org.za/scielo.php?script=sci_arttext&pid=S1562-82642017000200002">organ donors</a>. </p>
<p>In South Africa, for example, <a href="http://www.scielo.org.za/scielo.php?script=sci_arttext&pid=S1562-82642017000200002">only 18%</a> of families gave permission for organ donation after a death (at a hospital) in 2017. This means 82% of families chose not to support organ donation.</p>
<p>Though the <a href="http://www.scielo.org.za/scielo.php?script=sci_arttext&pid=S1562-82642017000200002">first heart transplant in history</a> was performed in an African country, this region has the fewest transplants of any continent. </p>
<p>The median number of kidney transplant facilities in Africa is <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8084720/pdf/main.pdf">0.15 per million population</a> (against 0.42 globally), and transplant-related services are often scarce. Only South Africa, Nigeria, Kenya, Ghana, Tanzania, Sudan, Seychelles, Namibia, Mauritius, Côte d'Ivoire and Ethiopia perform <a href="http://www.transplant-observatory.org/">transplants</a>. </p>
<p>There are a number of reasons for the shortage of donated organs. Religious or cultural beliefs and a lack of <a href="https://www.premiumtimesng.com/news/more-news/470868-nigeria-has-no-regulatory-body-for-organ-harvesting-transplanting-consultant.html">regulatory or policy framework</a> are among them. There is also the challenge of a <a href="https://latinaer.springeropen.com/articles/10.1186/s40503-019-0068-2">poor incentives system</a>, and inadequate <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8314926/">cold-chain facilities</a>. </p>
<p>All these factors have a significant impact on the organ supply chain. They have in turn triggered other serious social problems, such as a flourishing black market for organ sourcing, organ trafficking, and <a href="https://www.bbc.co.uk/news/uk-england-london-61908876">monetising organ donations</a>. For instance, organs, particularly kidneys, are <a href="https://www.bbc.co.uk/news/world-middle-east-36083800">often sold</a> through the black market by poor people in developing countries.</p>
<p>Based on <a href="https://www.emerald.com/insight/content/doi/10.1108/SCM-12-2022-0457/full/html?utm_source=rss&utm_medium=feed&utm_campaign=rss_journalLatest">our research</a>, we provide insights into the challenges confronting Africa’s organ transplant supply chain systems. </p>
<h2>Links in the supply chain</h2>
<p>The organ supply chain is not a simple, linear process. Similar to the <a href="https://theconversation.com/heading-into-the-third-year-of-the-pandemic-the-us-blood-supply-is-at-a-10-year-low-175906">blood supply chain</a>, it involves collecting, testing, distributing, and transfusing donated organs to patients at geographically spread transplant centres. </p>
<p>Having to use a cold chain system for perishable products like organs only makes things worse, especially in sub-Saharan Africa with its inadequate logistical and infrastructure capabilities. </p>
<p>To strengthen the organ supply chains in sub-Saharan Africa, there is a need for collaborative efforts from multiple stakeholders including clinicians, public health experts, supply chain experts, governments, religious bodies, non governmental organisations, academics and the public. </p>
<p>Together, these stakeholders should review and improve current practices of donating and transplanting organs. </p>
<p>As supply chain experts, we have seen that what works in optimising supply chains are strong governance frameworks, partnerships, systems, people, and data. We suggest five actions based on <a href="https://www.emerald.com/insight/content/doi/10.1108/SCM-12-2022-0457/full/html?utm_source=rss&utm_medium=feed&utm_campaign=rss_journalLatest">our research</a>:</p>
<ol>
<li><p><strong>Develop a robust regulatory model:</strong>
Organ donation and transplantation is a well-regulated field. But only a <a href="https://dailytrust.com/grey-areas-organ-transplantation-in-nigeria">few countries</a> in sub-Saharan Africa have a <a href="https://www.intechopen.com/chapters/74329">legal framework</a> in place to monitor and control the sourcing and transplantation of human organs, cells and tissues. The framework should include an organ donation register, clear guidelines, best practices and protocols. There should be clear incentives or compensation mechanisms for living organ donors, consistent with the society’s moral ideals.</p></li>
<li><p><strong>Create local working groups:</strong>
Last-mile access to healthcare in Africa continues to be one of the most <a href="https://link.springer.com/chapter/10.1007/978-1-4614-5885-2_19">difficult obstacles</a> that governments, donors, and businesses must overcome. Therefore, a decentralised approach is needed to manage the database of patients waiting for a transplant in hospitals at various locations, and for making organ matches swiftly. </p></li>
<li><p><strong>Improve medical cold chain systems:</strong>
The safety and quality of human organs will be seriously compromised if temperature monitoring and maintenance logistics systems are insufficient to get them to hospitals in time. The African continent has <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7187137/">suboptimal cold chain capacity</a> to transport blood and components to hospital. </p></li>
</ol>
<p>A cold chain process is required for most food and pharmaceuticals before they can be delivered to the customers. This is an area where sub-Saharan Africa <a href="https://www.forbesafrica.com/opinion/2020/10/20/the-cold-treatment-for-vaccines/">falls short</a>. On average, <a href="https://www.gcca.org/building-cold-chain-africa">50%</a> of the food produced in African countries is wasted due to inadequate temperature-controlled storage facilities. This is also <a href="https://www.pharmaceutical-technology.com/sponsored/africas-last-mile-building-viable-vaccine-supply-chains/">hindering</a> vaccination programmes around the continent. </p>
<ol>
<li><p><strong>Create awareness:</strong>
The socio-demographic characteristics of populations should be taken into consideration when designing programmes to raise awareness about organ donation. Campaigns should be tailored for age, profession, education level, religious affiliation, and cultural sensitivity. </p></li>
<li><p><strong>Establish knowledge exchange hubs:</strong>
Governments should establish centres of excellence on organ donation, logistics and transport, enabling collaboration among government, industry, civil society and academics. Such a forum could evaluate similarities and differences between country practices.</p></li>
</ol><img src="https://counter.theconversation.com/content/185916/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Adegboyega Oyedijo is a Chartered Member of both the Chartered Institute of Procurement and Supply (CIPS) and the Chartered Institute of Logistics and Transport (CILT). He has received funding from The British Academy.</span></em></p><p class="fine-print"><em><span>George Zsidisin does some volunteer work for the Libertarian Party in the U.S. </span></em></p><p class="fine-print"><em><span>Jamal El Baz, Marcia Mkansi, and Temidayo Akenroye do not work for, consult, own shares in or receive funding from any company or organisation that would benefit from this article, and have disclosed no relevant affiliations beyond their academic appointment.</span></em></p>Demand for human organs has surpassed supply. This is leading to serious problems including a flourishing black market for organ trafficking.Temidayo Akenroye, Associate Professor of Supply Chain & Analytics, University of Missouri-St. LouisAdegboyega Oyedijo, Lecturer in Operations and Supply Chain Management, University of LeicesterGeorge Zsidisin, Professor of Supply Chain Management , University of Missouri-St. LouisJamal El Baz, Associate Professor, Supply Chain Management, Ibn Zohr UniversityMarcia Mkansi, Professor, University of South AfricaLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/2062982023-06-04T20:04:32Z2023-06-04T20:04:32ZPeople thinking of voluntary assisted dying may be able to donate their organs. We need to start talking about this<figure><img src="https://images.theconversation.com/files/528191/original/file-20230525-23-9njh7.jpg?ixlib=rb-1.1.0&rect=2%2C0%2C995%2C666&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">
</span> <span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/multiracial-team-professional-medical-surgeons-performs-2089661560">Shutterstock</a></span></figcaption></figure><p>The number of people needing an organ transplant vastly outweighs the number of organs available. </p>
<p><a href="https://www.donatelife.gov.au/sites/default/files/2023-02/OTA%202022%20Donation%20and%20Transplantation%20Activity%20Report.pdf">In 2022</a> there were about 1,800 Australians waiting for an organ but only about 1,200 people received an organ transplant.</p>
<p>But in <a href="https://onlinelibrary.wiley.com/doi/10.1111/imj.16085">a recent paper</a>, I outline one unexplored option for increasing the number of potential organ donors in Australia – transplanting organs from people undergoing voluntary assisted dying. This would involve transplanting organs only after someone had died.</p>
<p>It’s estimated <a href="https://jamanetwork.com/journals/jama/article-abstract/2616383">about 10%</a> of people eligible for voluntary assisted dying are likely to be medically suitable to donate their organs. Based on <a href="https://www.safercare.vic.gov.au/sites/default/files/2022-09/Voluntary%20Assisted%20Dying%20Review%20Board%20Report%20of%20Operations%20July%202021-June%2022_FINAL.pdf">Victorian figures</a> alone, this could lead to about an extra 40 potential organ donors each year.</p>
<p>This type of organ donation has taken place <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9297969/">for more than 20 years</a> in Europe, and more recently in Canada.</p>
<p>Organs transplanted from donors undergoing voluntary assisted dying <a href="https://jamanetwork.com/journals/jamasurgery/article-abstract/2769118">have</a> <a href="https://onlinelibrary.wiley.com/doi/abs/10.1111/ajt.16267">similar</a> <a href="https://onlinelibrary.wiley.com/doi/abs/10.1111/ajt.16971">success rates</a> to more traditional donations.</p>
<p>Yet, this is a discussion we’ve yet to have in Australia. Here are some of the ethical and practical issues we need to start talking about.</p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/voluntary-assisted-dying-will-be-available-to-more-australians-this-year-heres-what-to-expect-in-2023-196209">Voluntary assisted dying will be available to more Australians this year. Here's what to expect in 2023</a>
</strong>
</em>
</p>
<hr>
<h2>Is this ethical? It’s tricky</h2>
<p>The main ethical challenge is ensuring a person isn’t motivated to end their life prematurely so they can donate their organs.</p>
<p><a href="https://onlinelibrary.wiley.com/doi/abs/10.1111/ajt.13746">Internationally</a>, <a href="https://jme.bmj.com/content/42/8/486.short">this challenge</a> is mainly addressed by having <a href="https://www.sciencedirect.com/science/article/pii/S1600613523000291">independent assessments</a> by multiple doctors. This is to ensure the motivation is genuine and honest, much like assessing someone before voluntary assisted dying.</p>
<p>Similarly, it is important the doctor of someone undergoing voluntary assisted dying isn’t persuading them to donate an organ. This means any doctor overseeing voluntary assisted dying may be limited in how much they can discuss organ donation with their patient. </p>
<p>Again, this <a href="https://onlinelibrary.wiley.com/doi/abs/10.1111/ajt.13746">has been managed internationally</a> by having separate, independent doctors overseeing organ donation and voluntary assisted dying, <a href="https://www.cmaj.ca/content/190/44/E1305.short">without one influencing</a> the other.</p>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/528192/original/file-20230525-27-sjwdaa.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="Elderly woman in bed hand on covers" src="https://images.theconversation.com/files/528192/original/file-20230525-27-sjwdaa.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/528192/original/file-20230525-27-sjwdaa.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=437&fit=crop&dpr=1 600w, https://images.theconversation.com/files/528192/original/file-20230525-27-sjwdaa.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=437&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/528192/original/file-20230525-27-sjwdaa.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=437&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/528192/original/file-20230525-27-sjwdaa.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=549&fit=crop&dpr=1 754w, https://images.theconversation.com/files/528192/original/file-20230525-27-sjwdaa.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=549&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/528192/original/file-20230525-27-sjwdaa.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=549&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
<figcaption>
<span class="caption">Is this what people really want, with so little time left?</span>
<span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/senior-woman-laying-on-bed-hospital-1054837748">Shutterstock</a></span>
</figcaption>
</figure>
<p>Organ donation may also affect the way voluntary assisted dying is conducted, which <a href="https://www.sciencedirect.com/science/article/pii/S1600613523000291">may impact</a> participants’ very limited quality of life. </p>
<p>That’s because determining if someone is eligible to donate an organ involves a number of <a href="https://jme.bmj.com/content/43/9/601.short">investigations</a>. These may include blood tests, radiology (imaging) and numerous clinical encounters to exclude diseases such as cancer, which would prevent someone donating their organs. These investigations may be exhausting but necessary.</p>
<p>This burden must be weighed against the participant’s wishes and motivation to donate their organs. So people must also be informed of the impact organ donation will have on their limited life left. </p>
<p>The choices of people considering this option must be respected and they must be given multiple opportunities to review their decision, without undue influence or bias.</p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/three-ethical-ways-to-increase-organ-donation-in-australia-42744">Three ethical ways to increase organ donation in Australia</a>
</strong>
</em>
</p>
<hr>
<h2>Practical issues: coordination, location, regulation</h2>
<p>Practically, combining organ donation and voluntary assisted dying is <a href="https://onlinelibrary.wiley.com/doi/abs/10.1111/ajt.13746">challenging</a>. This includes the difficulty organising and coordinating specialists in organ donation, voluntary assisted dying and transplantation.</p>
<p>This is why, internationally, organ donation of this nature mostly occurs in large hospitals, where it’s easier to coordinate.</p>
<p>So if people want to donate an organ this way, they may spend their last moments in an unfamiliar environment.</p>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/528195/original/file-20230525-15-irsqg9.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="Patient being wheeled on stretcher through hospital corridors" src="https://images.theconversation.com/files/528195/original/file-20230525-15-irsqg9.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/528195/original/file-20230525-15-irsqg9.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/528195/original/file-20230525-15-irsqg9.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/528195/original/file-20230525-15-irsqg9.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/528195/original/file-20230525-15-irsqg9.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/528195/original/file-20230525-15-irsqg9.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/528195/original/file-20230525-15-irsqg9.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=503&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
<figcaption>
<span class="caption">People may have to be moved to a large hospital with the facilities and staff on hand.</span>
<span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/surgeon-assistant-team-transport-move-stretcher-2062330820">Shutterstock</a></span>
</figcaption>
</figure>
<p>Efforts have been made <a href="https://jamanetwork.com/journals/jamasurgery/article-abstract/2776765">internationally</a> to prioritise these valuable last moments by giving people the choice of where voluntary assisted dying occurs (<a href="https://www.cmaj.ca/content/190/44/E1305.short">such as their home</a>). But this currently only occurs in a minority of cases and increases the complexity of organ donation.</p>
<p>Regulating the process is also essential to developing a safe, trustworthy and effective program. Ideally a centralised organisation such as Australia’s national <a href="https://www.donatelife.gov.au">Organ and Tissue Authority</a> would organise, undertake and regulate this.</p>
<p>However, this may be challenging given voluntary assisted dying practices are specific to each state.</p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/an-opt-out-system-isnt-the-solution-to-australias-low-rate-of-organ-donation-108336">An opt-out system isn't the solution to Australia's low rate of organ donation</a>
</strong>
</em>
</p>
<hr>
<h2>The challenges ahead</h2>
<p>If someone considering voluntary assisted dying wants to donate their organs and is deemed eligible, there is currently <a href="https://onlinelibrary.wiley.com/doi/10.1111/imj.16085">no legal barrier in Australia</a> to stop them.</p>
<p>What might prevent them is how their doctor responds, and whether there are the services and organisations willing to fulfil this request ethically and practically.</p>
<p>The next step in considering this form of organ donation is to discuss the prospect publicly. </p>
<p>Every extra donated organ is potentially lifesaving. So we should make every effort to consider potential safe and ethical ways to increase donation and transplantation rates.</p><img src="https://counter.theconversation.com/content/206298/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Dr Robert Ray is also a physician trainee at Barwon Health, Geelong.</span></em></p>Every extra organ available for donation is potentially lifesaving. And it can be done safely and ethically.Robert Ray, Affiliate Associate Lecturer, School of Medicine, Deakin UniversityLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1997212023-02-15T13:23:10Z2023-02-15T13:23:10ZPrisoners donating organs to get time off raises thorny ethical questions<figure><img src="https://images.theconversation.com/files/509871/original/file-20230213-14-12rt3m.jpg?ixlib=rb-1.1.0&rect=0%2C34%2C4556%2C2998&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Prisoners at a yard at the Nebraska State Penitentiary in Lincoln, Neb.</span> <span class="attribution"><a class="source" href="https://newsroom.ap.org/detail/PrisonCrowdingNebraska/27819d626cb24aa586c3f2983975ec4b/photo?Query=prison%20u.s.%20inmates&mediaType=photo&sortBy=&dateRange=Anytime&totalCount=4733&currentItemNo=42">AP Photo/Nati Harnik</a></span></figcaption></figure><p>In January 2023 two Democratic representatives, Judith Garcia and Carlos Gonzalez, <a href="https://malegislature.gov/Bills/193/HD3822">proposed a bill</a> that would offer prisoners in Massachusetts a new way to win reduction in their sentences: by donating their bone marrow or vital organs.</p>
<p>The bill stated that the commissioner of the Department of Corrections should establish both a bone marrow and organ donation program within the department and a committee focused on bone marrow and organ donation that would set eligibility standards for inmates interested in the program. While forbidding commissions or monetary payments for donors, it stated that prisoners could “gain not less than 60 and not more than 365 day reduction in the length of their committed sentence” if they donated bone marrow or an organ. </p>
<p><a href="https://www.cbsnews.com/boston/news/massachusetts-bill-prisoners-donate-organs-reduced-sentences/">The legislators claimed</a> that their proposal would respect the bodily autonomy of incarcerated people by letting them decide what to do with their vital organs. It also would <a href="https://doi.org/10.1097/MOT.0b013e3283447b1c">address racial disparities</a> by helping to expand the pool of donors.</p>
<p>Recently, however, Garcia and Gonzalez <a href="https://abcnews.go.com/US/massachusetts-bill-allowing-prisoners-donate-organs-reduced-time/story?id=96989325">have walked back their proposal</a> and are planning to introduce a version without the promise of a sentence reduction. </p>
<p>Still, the idea of giving sentence reductions in return for organ donation <a href="https://apnews.com/article/organ-donation-massachusetts-state-government-health-a11a7f93dd13ad018bbb1899dbb4623a">raises serious ethical issues</a>. As someone who <a href="https://www.sup.org/books/title/?id=20093">has studied punishment and imprisonment</a>, including the conditions of confinement in American prisons, I’m aware that some states have allowed prisoners to donate organs without any external incentives. But the question is whether prison inmates can ever consent freely to organ donation.</p>
<h2>The history of organ donation</h2>
<p>The idea of transplanting organs as a medical cure <a href="https://doi.org/10.1101/cshperspect.a014977">is quite old</a>. In 600 B.C., skin flaps were used for replacing missing noses, and 16th -century surgeons considered taking grafts of a patient’s tissue for another patient. But the practice of organ donation and transplantation began in earnest only in 1954, when Joseph Murray <a href="https://doi.org/10.1001/jama.1956.02960390027008">carried out the first successful kidney transplant</a>. Other donated organs, including livers and hearts, were transplanted a decade later. However, it <a href="https://doi.org/10.1101/cshperspect.a015685">has always been an ethically fraught area</a>, as the need for donated organs far outstrips the supply.</p>
<p>In 2022, 6,466 people <a href="https://unos.org/news/2022-organ-transplants-again-set-annual-records/">became living organ donors</a> in the United States, and another 14,903 people became posthumous organ donors. Yet, as of early 2023, more than 100,000 men, women and children <a href="https://www.donors1.org/learn-about-organ-donation/who-can-donate/get-the-facts/">are waiting for an organ donation so they can have a transplant</a>. The MIT Technology Review <a href="https://www.technologyreview.com/2023/02/03/1067768/massachusetts-bill-prisoners-swap-organs-freedom/">notes</a> that it is even harder for racial and ethnic minorities to get the organs they need. And thousands of people will die before the organ they need becomes available.</p>
<p>Altruism and the generosity of donors have <a href="https://journalofethics.ama-assn.org/article/organ-donation-altruism-vs-incentive/2002-08">neither closed the gap between the supply of donated organs</a> and the demand nor addressed the issue that <a href="https://nap.nationalacademies.org/catalog/26364/realizing-the-promise-of-equity-in-the-organ-transplantation-system">people of color struggle to find a match</a>.</p>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/509882/original/file-20230213-3866-ejcubu.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="Two health care professionals working on a procedure with a patient lying on a bed." src="https://images.theconversation.com/files/509882/original/file-20230213-3866-ejcubu.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/509882/original/file-20230213-3866-ejcubu.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/509882/original/file-20230213-3866-ejcubu.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/509882/original/file-20230213-3866-ejcubu.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/509882/original/file-20230213-3866-ejcubu.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/509882/original/file-20230213-3866-ejcubu.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/509882/original/file-20230213-3866-ejcubu.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=503&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
<figcaption>
<span class="caption">Two organ procurement coordinators work on the body of a potential organ donor at Mid-America Transplant Services in St. Louis.</span>
<span class="attribution"><a class="source" href="https://newsroom.ap.org/detail/OrganTransplants/c44be320e3434762b75923c5f8207890/photo?Query=subjects.code:97b84b58814a1004819ddf092526b43e&mediaType=photo&sortBy=&dateRange=Anytime&totalCount=260&currentItemNo=39">AP Photo/Whitney Curtis</a></span>
</figcaption>
</figure>
<p>Recognizing these facts, various organizations and advocacy groups <a href="https://optn.transplant.hrsa.gov/professionals/by-topic/ethical-considerations/ethical-principles-in-the-allocation-of-human-organs/">have developed codes of ethics for donating organs</a>. For example,
according to the American Medical Association, organ donation is acceptable only if <a href="https://journalofethics.ama-assn.org/article/ama-code-medical-ethics-opinions-organ-transplantation/2012-03">donors give their informed consent</a>. Additionally, donors <a href="https://doi.org/10.1007/s10561-012-9303-7">must be provided with</a> information regarding the purpose and risks associated with tissue donation. They must also be made familiar with any alternatives to donation and the right to withdraw consent. </p>
<p>Congress <a href="https://www.govinfo.gov/content/pkg/STATUTE-98/pdf/STATUTE-98-Pg2339.pdf">passed the National Organ Transplant Act</a> in 1984 and established the Organ Procurement and Transplantation Network to maintain a national system to match organs and individuals. The organ transplant law intended to make sure that organs are not treated as commodities to be bought and sold. </p>
<h2>Inmates as organ donors</h2>
<p>Garcia and Gonzalez are not the first state officials to propose turning to prisoners to help with the organ supply problem in recent years.</p>
<p>Some of those cases are quite unusual. For example, in 2010, Mississippi Gov. Haley Barbour suspended <a href="http://www.cnn.com/2010/CRIME/12/30/mississippi.sisters.prison.release/index.html">the life sentences of two sisters</a>, Gladys and Jamie Scott, on the condition that Gladys donate one of her kidneys to Jamie. Her dialysis treatment was costing the state almost US$200,000 per year, and Barbour wanted to save money by <a href="https://www.nytimes.com/2011/01/01/opinion/01herbert.html">facilitating the organ donation</a>. </p>
<p>In 2013, another governor, Ohio’s John Kasich, <a href="https://apnews.com/article/ef3c4e4fbd3540e29cac52cfadd5a8e0">took executive action</a> to explore the feasibility of allowing death row inmate Ronald Phillips to donate a kidney and other organs to sick relatives before he was put to death. But ultimately the state refused his request because of logistical and security issues involved in having the needed medical procedure done at an outside medical facility.</p>
<p>That same year, Utah became the first state <a href="https://www.prisonlegalnews.org/news/2015/jan/13/utah-first-explicitly-allow-organ-donation-prisoners/#">to enact legislation authorizing prisoners to donate organs</a>. It permits voluntary, posthumous organ donations by prisoners who die while they are behind bars. But, unlike the Massachusetts proposal, the Utah law <a href="https://www.ksl.com/article/23914638/inmates-donating-organs-bill-would-formalize-the-process">does not offer incentives or rewards to inmates</a> who sign up for the program.</p>
<p>Since 2016 Texas <a href="https://www.tdcj.texas.gov/divisions/cmhc/docs/cmhc_policy_manual/E-31.02.pdf">has had a policy similar to Utah’s</a>. That policy allows inmates who die in custody to arrange to donate organs after their death. The Texas policy states: “The inmate will receive no award or compensation of any kind for his donation, including but not limited to preferred treatment by the [Texas Department of Criminal Justice] or improved opportunity for parole.”</p>
<p>In 2018, South Carolina joined Utah and Texas <a href="https://law.justia.com/codes/south-carolina/2018/title-24/chapter-1/section-24-1-285/">in writing permission for inmate organ donation into state law</a>.</p>
<p>But they are exceptions. Today <a href="https://www.law.com/ctlawtribune/2022/12/14/the-ethics-and-politics-of-death-row-organ-donations/?slreturn=20230109213801">most states do not allow prisoners to donate organs at all</a>. And federal prison inmates cannot make posthumous organ donations – but they can make living donations to immediate family members so long as they freely consent to do so.</p>
<h2>Consent in a coercive environment</h2>
<p>Some scholars do not think that prison inmates can <a href="https://www.ojp.gov/ncjrs/virtual-library/abstracts/experimentation-prisoners-inadequacy-voluntary-consent">freely consent to organ donation</a> while being in the coercive environment of a prison. They regard inmate organ donation as <a href="https://optn.transplant.hrsa.gov/professionals/by-topic/ethical-considerations/the-ethics-of-organ-donation-from-condemned-prisoners/">exploiting a vulnerable population</a>.</p>
<p>And even some who believe that inmates should be allowed to donate organs were troubled by the initial proposal from Garcia and Gonzales. As the journalist Matthew Cunningham-Cook <a href="https://jacobin.com/2023/02/massachusetts-democrats-prisoner-organ-bone-marrow-donation">noted</a>, their original bill asked prisoners to “choose between their organs and their freedom” and was probably “not even … legal.” </p>
<p>While Rep. Gonzales <a href="https://abcnews.go.com/US/massachusetts-bill-allowing-prisoners-donate-organs-reduced-time/story?id=96989325">recently told</a> ABC News that “he was amending the language to remove the incentives,” he also noted that he would continue to push for legislation to allow inmate organ donation. Such legislation would, in his view, ensure that when it comes to the choice of whether to donate organs, inmates would “have the same basic rights as every citizen has in Massachusetts.”</p>
<p>In my view, this is a worthwhile goal, which, as Garcia and Gonzales now recognize, is best achieved without linking organ donation and sentence reductions.</p><img src="https://counter.theconversation.com/content/199721/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Austin Sarat does not work for, consult, own shares in or receive funding from any company or organization that would benefit from this article, and has disclosed no relevant affiliations beyond their academic appointment.</span></em></p>A scholar who has studied imprisonment explains why the promise of sentence reductions in return for organ donation raises ethical issues about whether inmates can ever consent freely.Austin Sarat, William Nelson Cromwell Professor of Jurisprudence and Political Science, Amherst CollegeLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1939692023-01-19T09:17:14Z2023-01-19T09:17:14ZOrgan donation: whether we opt in or out, research finds it’s the will of our family that matters<figure><img src="https://images.theconversation.com/files/504965/original/file-20230117-14393-yxly0k.jpg?ixlib=rb-1.1.0&rect=5%2C43%2C1243%2C953&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Liver transplant surgery.</span> <span class="attribution"><a class="source" href="https://www.flickr.com/photos/gabrielborda/4972286307/in/album-72157624732867691/">Gabriel Borda / Flickr</a>, <a class="license" href="http://creativecommons.org/licenses/by-nc/4.0/">CC BY-NC</a></span></figcaption></figure><p>Organ transplantation allows patients who are suffering from organ failure to receive a healthy organ from a donor. This procedure can help to extend and improve the lives of recipients, and is often the only hope for people who are in need of a transplant. </p>
<p>Unfortunately, there are not enough organs available for all the patients who need them. In the European Union, although 36,000 patients received a transplant in 2021, <a href="https://www.edqm.eu/en/eodd">20 patients died every day</a> while waiting for an organ. </p>
<h2>Difference among consent laws</h2>
<p>One strategy to address the shortage of transplantable organs is to increase the pool of potential donors by making changes to the system of consent. There are two main consent policies for deceased organ donation in place around the world: </p>
<ul>
<li><p>Opt-in: individuals must actively consent to becoming organ donors after they die; </p></li>
<li><p>Opt-out: individuals are deemed to have consented to organ donation unless they expressly indicated that they do not. </p></li>
</ul>
<p>In recent years, several European countries have changed their laws from opt-in to opt-out, including <a href="https://pubmed.ncbi.nlm.nih.gov/24046530/">Greece</a>, <a href="https://www.landlaeknir.is/english/news/detail/item36004/we-give-life-we-automatically-become-organ-donors-from-1-january-2019">Iceland</a>, the <a href="https://journals.lww.com/transplantjournal/Fulltext/2018/08000/Dutch_Law_Approves_Opt_out_System.6.aspx">Netherlands</a>, <a href="https://www.france24.com/en/live-news/20220515-swiss-switch-to-presumed-consent-on-organ-donations">Switzerland</a> and the <a href="https://www.theguardian.com/society/2020/may/19/deceased-uk-adults-to-be-deemed-organ-donors-in-opt-out-system">United Kingdom</a>. More European countries are considering it, such as Germany, Denmark and Romania. </p>
<p>The rationale behind this shift is that opt-out systems could <a href="https://theconversation.com/an-opt-out-organ-donor-system-could-address-canadas-shortage-of-organs-for-transplant-145088">increase organ procurement rates</a>, as the default assumption is that the individual is <a href="https://theconversation.com/opt-out-organ-donation-presume-kindness-not-consent-to-save-more-lives-117685">willing to donate</a>. This eliminates the need for people to actively register as organ donors, which can be a major barrier for some people.</p>
<h2>Family involvement</h2>
<p>Although several studies have been conducted to assess the actual impact of consent policies on organ procurement rates, their results are conflicting. </p>
<p>Overall, the <a href="https://link.springer.com/article/10.1007/s10620-018-5388-6">evidence</a> shows that opt-out systems are associated with higher rates of organ retrieval. However, it is not clear if and to what extent the introduction of an opt-out system, by itself, causes the increase.</p>
<p>In our <a href="https://bmjopen.bmj.com/content/12/9/e057107">study</a>, we tried to find out. To exclude the influence of other factors, we focused on how individuals’ preferences and decisions, or lack thereof, directly determine the outcome, i.e. whether organs can be retrieved or not. </p>
<p>On the face of it, the situation seems straightforward. Doctors always respect people’s preferences, regardless of the system. When the deceased wanted to become a donor, doctors proceed. When the deceased didn’t want to donate, doctors do not proceed. The difference between opt-in and opt-out would only therefore show up when the deceased did not express any preference. If an opt-out system is in place the organs can be retrieved under these circumstance. If an opt-in system is in place, they cannot be retrieved.</p>
<p>However, the family also has a role to play in the decision-making process. In most countries, both opt-in and opt-out, the family is consulted about organ donation. In practice, therefore, instead of retrieving or not retrieving organs by default, doctors typically follow the family’s decision. </p>
<p>In our research, we found that the only time they didn’t was when the family of the deceased was unable to make a decision on the matter or couldn’t be located by medical teams in time – or when the deceased didn’t have any relatives. It is only in these circumstances, therefore, that an the opt-out system makes a difference.</p>
<h2>Consent systems only make a difference on rare occasions</h2>
<p>Most experts in the field know that this circumstance is uncommon, but this is too vague. Hence, to answer this question, we sought data from both scientific articles and institutional reports all over the world.</p>
<p>Based on data from 20+ countries, we found that this circumstance is indeed rare. Overall, it occurs in less than 5% of the cases. In Germany, Denmark, Finland, Spain and the United Kingdom, statistics show that it ranges from 0 to 2% of all cases of potential organ donors.</p>
<p>Therefore, according to our analysis, changing the system of consent in any of these countries, all other things being equal, would have a very limited direct impact on organ donation rates. However, this does not necessarily mean that moving from opt-in to opt-out is ineffective, because the move may have indirect consequences. For example, increased press coverage of organ donation could raise public awareness of the organ shortage and reduce the number of individuals and families who object.</p>
<p>What our research shows is that politicians and people in general should perhaps not put so much focus on changing consent policies for donation and more on modifiable factors influencing family decision-making, such as building trust by providing high quality care for the potential donor and adequate information on the process of organ procurement, and by using well trained professionals in the approach.</p><img src="https://counter.theconversation.com/content/193969/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Alberto Molina Pérez is a member of ELPAT-ESOT (Ethical, Legal and Psychosocial Aspects of Organ Transplantation, a division of the European Society for Organ Transplantation). </span></em></p><p class="fine-print"><em><span>David Rodríguez-Arias collaborates in several research initiatives with the following organisations linked to organ donation and transplantation: European Society of Organ Transplantation and Spanish Organización Nacional de Trasplantes. </span></em></p><p class="fine-print"><em><span>Janet Delgado is a member of ELPAT-ESOT (Ethical, Legal and Psychosocial Aspects of Organ Transplantation, a division of the European Society for Organ Transplantation).</span></em></p>Contrary to what we may think, changing people’s default status from non-donor to donor cannot significantly increase organ donation rates — as long as the family is involved in the decision.Alberto Molina Pérez, Investigador posdoctoral en ética y epistemología de la medicina, Instituto de Estudios Sociales Avanzados (IESA - CSIC) David Rodríguez-Arias, Profesor de Bioética, Universidad de GranadaJanet Delgado, Research Assistant in Departamento de Filosofía I, Universidad de GranadaLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1773222022-08-02T04:48:45Z2022-08-02T04:48:45ZHow do I donate my brain to science?<figure><img src="https://images.theconversation.com/files/455453/original/file-20220331-17-65g91o.jpg?ixlib=rb-1.1.0&rect=2%2C0%2C995%2C744&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">
</span> <span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/young-conceptual-image-large-stone-shape-1032541603">Shutterstock</a></span></figcaption></figure><p>Have you ever thought about donating your brain to science? Don’t worry, I mean after you die.</p>
<p>Perhaps you’ve heard about donating your body to science or donating organs for transplants and wondered if it’s similar. Or perhaps you have a vague notion donating your brain might be a good idea and want to know what’s involved.</p>
<p>If you do go ahead and donate your brain, it would be stored in a <a href="https://www.sydney.edu.au/medicine-health/schools/school-of-medical-sciences/discipline-of-pathology/nsw-brain-tissue-resource-centre.html">brain bank</a>, perhaps one at the University of Sydney, where I’m the director.</p>
<p>Here are the answers to some of the most common questions we’re asked about donating your brain to science.</p>
<h2>Is it like donating a kidney?</h2>
<p>No, donating your organs, such as kidneys or your liver, during your life or after your death is <a href="https://www.donatelife.gov.au">for transplants</a>. A brain is definitely not for transplants. </p>
<p>Donating your body to science is also different and is largely so medical or allied health students can study <a href="https://www.sydney.edu.au/medicine-health/schools/school-of-medical-sciences/discipline-of-anatomy-and-histology/body-donations.html">human anatomy</a> including brain anatomy.</p>
<p>Donating your brain to a brain bank after you die allows researchers to use your brain tissue for research.</p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/dead-yet-science-scaremongering-and-organ-donation-10458">Dead yet? Science, scaremongering and organ donation</a>
</strong>
</em>
</p>
<hr>
<h2>What type of brains are you after?</h2>
<p>Scientists want to study all types of brains. That includes brains from people who have brain disease, such as dementia or depression, when they sign up for our program, and those who don’t have brain disease initially but then develop it.</p>
<p><div data-react-class="Tweet" data-react-props="{"tweetId":"1226109922527469568"}"></div></p>
<p>To understand why certain people get a brain diseases scientists need to compare affected brains to those from people without brain disease. Brain diseases such as Alzheimer’s disease and stroke are among Australia’s <a href="https://www.aihw.gov.au/reports/australias-health/causes-of-death">biggest causes of death</a>. Addiction, anxiety and depression are <a href="https://www.aihw.gov.au/reports/australias-health/burden-of-disease">major causes of disease</a>. </p>
<h2>How will my brain be used?</h2>
<p>Researchers use donated brain tissue to firstly confirm the patient’s diagnosis. Diseases like Alzheimer’s disease can only be confirmed after death. </p>
<p>By studying brain tissue, researchers can also learn about how brain disease progresses. By studying diseases at the microscopic level we are trying to find how they might be better diagnosed and treated.</p>
<p>We still know very little about what happens in the brain to cause these conditions and the reasons why the most promising treatments fail to improve them. </p>
<p>Many treatments’ ability to cure brain diseases in animals, but there is a high rate of failure when they are tried in humans. This is because our brains are so uniquely human, in terms of size and complexity. The only accurate model is the human brain itself. </p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/what-causes-alzheimers-disease-what-we-know-dont-know-and-suspect-75847">What causes Alzheimer’s disease? What we know, don’t know and suspect</a>
</strong>
</em>
</p>
<hr>
<h2>What’s actually involved?</h2>
<p>When you die, staff from the brain bank liaise with hospital or aged-care staff, funeral directors, and your next-of-kin. Your body is transported to a mortuary, either at a public hospital or forensic medicine centre, and a brain-only autopsy is carried out. </p>
<p>The entire brain and spinal cord are removed by mortuary staff and immediately transported by brain bank staff to the bank for further preparation. </p>
<p>At the bank, staff work quickly to divide the brain in two: one half is placed into a chemical fixative, while the other half is dissected and placed in a -80°C freezer. The time between death and fixation or freezing is called the post-mortem interval and it needs to be kept as short as possible to maximise the success of future analytical techniques. </p>
<p>The fixed tissue remains in solution for three weeks before being dissected into a number of blocks that are then embedded in wax and allowed to harden. These blocks are then cut with a very fine blade to produce sections one hundredth of a millimetre thick. These sections are stained for disease-specific proteins to allow a diagnosis to be formally made by the bank’s neuropathologist. </p>
<p>Researchers interested in a specific brain disease apply to the bank’s scientific committee for tissue. A prospective study will often involve both fixed and frozen tissue so complementary spatial (from fixed tissue) and molecular (frozen tissue) studies can be performed. </p>
<p>We store about 500 brains from donors with a variety of diseases and those with “normal” brains. </p>
<h2>Why do people sign up?</h2>
<p>People donate their brains to science for all sorts of reasons. </p>
<p><a href="https://link.springer.com/article/10.1007/s10561-019-09786-3">A review</a> by colleagues in New Zealand found a major reason was a desire to help others. </p>
<p>Major reasons for not donating included the family was against it, religious concerns, and being unaware that brain donation is possible.</p>
<p>Donation was more likely if people had a thorough knowledge and understanding of the entire process.</p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/donating-your-body-to-science-dont-worry-its-not-what-it-used-to-be-5567">Donating your body to science? Don't worry, it's not what it used to be</a>
</strong>
</em>
</p>
<hr>
<h2>OK, you’ve convinced me. What’s next?</h2>
<p>The first step is to get in touch with <a href="https://brainfoundation.org.au/support-us/donate-your-brain/">your local brain bank</a> to find out what’s involved. </p>
<p>After discussing with your family or friends and giving <a href="https://www.safetyandquality.gov.au/our-work/partnering-consumers/informed-consent">informed consent</a>, prospective brain donors will sign up to a program. </p>
<p>Some donor programs are associated with referral clinics for specific diseases such as Parkinson’s disease or motor neuron disease <a href="https://mndnsw.org.au/about-mnd/mnd-research/54-participating/669-brain-donor-program.html">motor neuron disease</a>. In this case, patients will be made aware of brain donation by their specialist and will be contacted by the bank if they give permission.</p>
<p>The brain bank follow donor’s lifestyle and medical history using annual questionnaires and optional additional studies.</p>
<p>We need this information years before you die to build a more complete picture of the person behind the brain, and any issues that may relate to brain disease.</p>
<h2>Thank you</h2>
<p>Australia’s brain banks have already contributed to many findings, including research into <a href="https://www.science.org/doi/10.1126/science.aah6205">Alzheimer’s disease</a>, <a href="https://www.science.org/doi/10.1126/science.aao1157">alcohol addiction</a>, <a href="https://www.nature.com/articles/ng.536">young-onset dementia</a> and <a href="https://movementdisorders.onlinelibrary.wiley.com/doi/10.1002/mds.21956">Parkinson’s disease</a>. </p>
<p>So thank you for considering donating your brain to science so we can have a chance of learning more.</p><img src="https://counter.theconversation.com/content/177322/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Greg Sutherland is the Director of the New South Wales Brain Research Tissue Centre that currently receives funding from the National Institute on Alcohol Abuse and Alcoholism (USA; R28AA012725)</span></em></p>No, it’s not like donating a kidney. But it is still a gift.Greg Sutherland, Associate Professor, Pathology, School of Medical Sciences, University of SydneyLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1619992022-07-28T17:39:34Z2022-07-28T17:39:34ZKilling prisoners for transplants: Forced organ harvesting in China<figure><img src="https://images.theconversation.com/files/476240/original/file-20220727-1302-ejyizd.jpg?ixlib=rb-1.1.0&rect=288%2C387%2C2976%2C1938&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">A limited supply of donor organs, paired with a massive demand for transplants, has fuelled the global organ trafficking industry, which exploits poor, underprivileged and persecuted members of society as a source of organs to be purchased by wealthy transplant tourists.</span> <span class="attribution"><span class="source">(AP Photo/Ebrahim Noroozi)</span></span></figcaption></figure><iframe style="width: 100%; height: 100px; border: none; position: relative; z-index: 1;" allowtransparency="" allow="clipboard-read; clipboard-write" src="https://narrations.ad-auris.com/widget/the-conversation-canada/killing-prisoners-for-transplants--forced-organ-harvesting-in-china" width="100%" height="400"></iframe>
<p>Organ transplantation is a <a href="https://www.cihi.ca/en/annual-statistics-on-organ-replacement-in-canada-2011-to-2020">life-saving therapy</a> for millions of patients and one of the <a href="https://www.who.int/health-topics/transplantation#tab=tab_1">greatest successes of modern medicine</a>. However, a limited supply of donor organs, paired with a massive demand for transplants, has fuelled the global organ trafficking industry which exploits poor, underprivileged and persecuted members of society as a source of organs to be purchased by wealthy transplant tourists.</p>
<p>Although <a href="https://www.unodc.org/unodc/en/human-trafficking/glo-act2/Countries/unodc-develops-toolkit-on-the-investigation-and-prosecution-of-trafficking-in-persons-for-organ-removal.html">this practice occurs in many countries</a>, the situation in China is particularly concerning. China is the only country in the world to have an industrial-scale organ trafficking practice that harvests organs from executed prisoners of conscience. This practice is known as forced organ harvesting. </p>
<p>To understand forced organ harvesting, it is useful to consider a hypothetical scenario: a patient in Canada with end-stage heart disease is in need of a life-saving cardiac transplant. </p>
<p>Doctors in Canada tell the patient he needs to go on a waiting list until a compatible donor dies under suitable conditions. This process can take weeks, months or even years. The patient then finds a transplant program in China that can schedule a cardiac transplant from a compatible donor weeks in advance. </p>
<p>This raises several important questions. Cardiac transplant can only come from deceased donors, so how can the hospital match this patient with a potential “deceased” donor weeks in advance? How did the hospital find this donor? How do they know when that donor will die? Has the donor consented to have their organs harvested? </p>
<h2>Distressing facts</h2>
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<iframe width="440" height="260" src="https://www.youtube.com/embed/u2bUusvh3c0?wmode=transparent&start=0" frameborder="0" allowfullscreen=""></iframe>
<figcaption><span class="caption">Explainer: China’s multi-billion-dollar murder for organs industry.</span></figcaption>
</figure>
<p>The answers to these questions are extremely distressing. China uses incarcerated <a href="https://chinatribunal.com/wp-content/uploads/2020/02/China-Tribunal-SHORT-FORM-CONCLUSION_Final.pdf">prisoners of conscience as an organ donor pool</a> to provide compatible transplants for patients. These prisoners or “donors” are executed and their organs harvested against their will, and used in a prolific and profitable transplant industry. </p>
<p>As transplant nephrologists and medical professionals, we aim to spread awareness about organ trafficking, particularly forced organ harvesting, to colleagues, institutions, patients and the public. We are involved with organizations like <a href="https://dafoh.org">Doctors Against Forced Organ Harvesting</a> and <a href="https://endtransplantabuse.org">International Coalition to End Transplant Abuse in China</a>, which have done considerable work in this area for over a decade.</p>
<p>China currently has the second-largest transplant program in the world. Transplant operations in China increased rapidly in the early 2000s without a corresponding rise in voluntary organ donors, which led to <a href="https://doi.org/10.1186/s12910-019-0406-6">questions about the source of the organs</a>. </p>
<p>During this period of rapid transplant growth, practitioners of the Buddhist Qi gong discipline known as Falun Gong, were being <a href="https://endtransplantabuse.org/introduction/?#introduction">detained, persecuted and killed in large numbers by the Chinese government</a>. Similarly, China in 2017 began a campaign of <a href="https://conservativepartyhumanrightscommission.co.uk/wp-content/uploads/2021/01/CPHRC-China-Report.pdf">mass detention, surveillance, sterilization and forced labour</a> against the Uyghur ethnic group of Xinjiang. </p>
<h2>Human rights investigations</h2>
<p>Concerns about forced organ harvesting began to surface in 2006-7 by the work of two international human rights lawyers, David Kilgour and David Matas, who were later <a href="https://doi.org/10.3325%2Fcmj.2016.57.219">nominated for a Nobel Peace Prize for their work</a>. The <a href="https://chinatribunal.com/">China Tribunal</a>, led by human rights lawyer Sir Geoffrey Nice, was formed in 2019 to independently investigate the claims of forced organ harvesting. </p>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/476244/original/file-20220727-1268-iqbmrs.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="A man standing outdoors in front of signs opposing forced organ harvesting in China" src="https://images.theconversation.com/files/476244/original/file-20220727-1268-iqbmrs.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/476244/original/file-20220727-1268-iqbmrs.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=450&fit=crop&dpr=1 600w, https://images.theconversation.com/files/476244/original/file-20220727-1268-iqbmrs.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=450&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/476244/original/file-20220727-1268-iqbmrs.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=450&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/476244/original/file-20220727-1268-iqbmrs.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=566&fit=crop&dpr=1 754w, https://images.theconversation.com/files/476244/original/file-20220727-1268-iqbmrs.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=566&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/476244/original/file-20220727-1268-iqbmrs.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=566&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
<figcaption>
<span class="caption">Human rights lawyer David Kilgour addresses Falun Gong practitioners demonstrating against forced organ harvesting in China outside Australia’s Parliament House in Canberra, Australia in November 2016.</span>
<span class="attribution"><span class="source">(AP Photo/Rod McGuirk)</span></span>
</figcaption>
</figure>
<p>The Tribunal examined multiple lines of evidence, including transplant numbers, medical testing of detained prisoners, recorded phone calls to transplant hospitals, as well as testimony from surgeons and prisoners. The final conclusion was issued in March of 2020 and “<a href="https://chinatribunal.com/wp-content/uploads/2020/02/China-Tribunal-SHORT-FORM-CONCLUSION_Final.pdf">confirmed beyond reasonable doubt” that China had been using executed prisoners of conscience as a source of transplant organs for many years</a>.</p>
<p>Despite Chinese transplant officials claiming significant transplant reform had taken place since 2015, recent evidence suggests that the barbaric practice of forced organ harvesting has continued. The <em>American Journal of Transplantation</em>, the world’s leading transplant journal, published a paper in April <a href="https://doi.org/10.1111/ajt.16969">that found that brain death had not been declared in many organ retrievals in China</a>, and that retrieval of the donor’s vital organs was the actual cause of death. In other words, these prisoners were being executed by removal of their organs for the purpose of transplantation. </p>
<p>The <a href="https://ishlt.org/">International Society of Heart and Lung Transplantation</a> issued a policy statement in June that excludes submissions that are “<a href="https://doi.org/10.1016/j.healun.2022.05.012">related to transplantation and involving either organs or tissue from human donors in the People’s Republic of China</a>.” </p>
<h2>Raising awareness</h2>
<p>Unfortunately, the use of unethical medical practices against marginalized groups is not new. The <a href="https://wienerholocaustlibrary.org/exhibition/science-and-suffering-victims-and-perpetrators-of-nazi-human-experimentation/">Nazis conducted horrific experiments</a> on Jewish victims in concentration camps. Soviet psychiatrists created a term known as <a href="https://www.bmj.com/content/bmj/293/6548/641.full.pdf">sluggish schizophrenia</a> to label political dissidents, depriving them of civic rights, employment and credibility. American researchers studied the effects of <a href="https://www.cdc.gov/tuskegee/timeline.htm">untreated syphilis in African Americans in the Tuskegee study</a>. </p>
<p>China has been executing prisoners of conscience and using their organs for transplantation for decades. Transplant physicians, medical professionals and the global community must raise awareness and pressure governments, institutions and hospitals to take action. </p>
<p>It is essential that we conduct due diligence and avoid collaborations where transparency regarding the source of organs cannot be guaranteed. We must protest the unjust and <a href="https://www.thestar.com/opinion/contributors/2022/07/25/the-largest-incarceration-of-a-minority-group-since-the-holocaust-canada-must-take-action-to-stop-the-genocide-of-uyghurs-in-china.html">inhumane incarceration and oppression of Uyghurs</a> and marginalized groups around the world. </p>
<p>We must encourage <a href="https://beadonor.ca/outside-ontario">organ donor registration</a> and <a href="https://lop.parl.ca/sites/PublicWebsite/default/en_CA/ResearchPublications/202029E">support initiatives</a> that increase donation to ultimately curb the demand for illegal organ trafficking. </p>
<p><em>Susie Hughes, executive director of End Transplant Abuse in China, co-authored this article.</em></p><img src="https://counter.theconversation.com/content/161999/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Ali Iqbal is affiliated with International Coalition to End Transplant Abuse in China, and Doctors Against Forced Organ Harvesting. </span></em></p><p class="fine-print"><em><span>Aliya Khan receives funding from industry partners for the development of new molecules for osteoporosis and parathyroid disease. Funds received from Amgen, Alexion, Ascendis, Chugai, Radius, Ultragenyx </span></em></p>China’s industrial-scale organ trafficking practice has been executing prisoners of conscience and using their organs for transplantation for decades. This is known as forced organ harvesting.Ali Iqbal, Transplant Nephrologist, Assistant Professor of Medicine, McMaster UniversityAliya Khan, Clinical professor, Faculty of Health Sciences, McMaster UniversityLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1758932022-03-11T13:19:38Z2022-03-11T13:19:38ZOrgans from genetically engineered pigs may help shorten the transplant wait list<figure><img src="https://images.theconversation.com/files/451412/original/file-20220310-17-1rk65gg.jpg?ixlib=rb-1.1.0&rect=0%2C0%2C1024%2C683&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Xenotransplantation has made significant strides over the past few decades.</span> <span class="attribution"><a class="source" href="https://www.gettyimages.com/detail/news-photo/xenotransplant-drawing-news-photo/179793591">BSIP/Universal Images Group via Getty Images</a></span></figcaption></figure><p>Demand for life-saving organ transplantation is at an all-time high. In 2021, a record <a href="https://unos.org/news/2021-all-time-records-organ-transplants-deceased-donor-donation/">41,000-plus</a> organ transplants were performed in the U.S., with top numbers for kidney, liver and heart transplants. But a limited supply of donor organs remains an ongoing problem. Currently <a href="https://optn.transplant.hrsa.gov/data/">over 100,000</a> people are on the transplant wait list in the U.S., and many more are unable to get on the list because of <a href="https://optn.transplant.hrsa.gov/professionals/by-topic/ethical-considerations/general-considerations-in-assessment-for-transplant-candidacy/">strict eligibility requirements</a> and <a href="https://doi.org/10.1001/jama.2017.19152">racial</a> <a href="https://doi.org/10.1001/jamanetworkopen.2020.34630">disparities</a> in access.</p>
<p>As a <a href="http://www.ctsurgery.pitt.edu/person/david-j-kaczorowski-md">cardiac transplant surgeon</a>, I have personally witnessed the tragedy of this shortage of donor organs. But I have also seen the potential of one possible solution to this problem: <a href="https://www.fda.gov/vaccines-blood-biologics/xenotransplantation">xenotransplantation</a>, or transplanting animal organs into human beings.</p>
<p>In <a href="https://www.scientificamerican.com/article/pig-kidneys-transplanted-to-human-in-milestone-experiment/">September 2021</a>, researchers successfully transplanted two genetically engineered pig kidneys into a brain-dead patient. And in January 2022, I was <a href="https://mirm-pitt.net/tissue-engineering/dr-david-kaczorowski-member-of-surgical-team-on-historic-first-successful-transplant-of-porcine-heart-into-adult-human-with-end-stage-heart-disease/">part of the surgical team</a> that conducted the <a href="https://www.nytimes.com/2022/01/10/health/heart-transplant-pig-bennett.html">first pig-to-human heart transplant</a> in a living patient. Recent news about the <a href="https://www.nytimes.com/2022/03/09/health/heart-transplant-pig-bennett.html">patient’s death</a> two months after the procedure is sobering, but researchers like me remain optimistic. While much work still needs to be done, these successes point to how far science has come toward making animal-to-human transplants a viable treatment possibility.</p>
<figure>
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<figcaption><span class="caption">The man who received the first pig heart transplant died on March 8, 2022, two months after the procedure.</span></figcaption>
</figure>
<h2>Early attempts</h2>
<p>While animal-to-human transplants have attracted considerable attention recently, many attempts have been made to transplant animal cells, tissues and organs into humans over the past 60 years, with varying degrees of success. </p>
<p>In the 1960s, kidney transplantation was not broadly practiced because of a <a href="https://doi.org/10.1093/bja/aer384">lack of donor organs</a>. <a href="https://doi.org/10.1093/ilar.37.1.9">Ethical and legal concerns</a> made it difficult to obtain live donors, and organs collected from deceased donors did not meet much success.</p>
<p>So a surgeon named Keith Reemtsma performed a <a href="https://doi.org/10.1111/j.1749-6632.1969.tb56392.x">series of 12 kidney transplants</a> using chimpanzees as donors. While most of the transplanted organs – and thus the human patients – survived for only a few weeks, one of the patients survived for nine months. Infection was the major issue in half of the patients, while irreversible organ rejection occurred in the other half. </p>
<p>Thomas Starzl is another surgeon who attempted animal-to-human organ transplants. He performed a similar <a href="https://doi.org/10.1097/00007890-196411000-00009">series of kidney</a> transplants around the same time as Reemtsma using baboons as donors, with the organs surviving up to two months. He’s most known for his <a href="https://doi.org/10.1111/xen.12306">liver transplants</a>, with three attempts using chimpanzee livers from 1966 to 1974 that lasted from 24 hours to less than 14 days. In the early 1990s, his two baboon liver transplants lasted for 26 and 70 days. While one of the baboon livers functioned well, the patient ultimately died from overwhelming infection. </p>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/451410/original/file-20220310-19-1vyj5ez.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="An infant lies in incubator, with her head cradled in an adult's hand." src="https://images.theconversation.com/files/451410/original/file-20220310-19-1vyj5ez.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/451410/original/file-20220310-19-1vyj5ez.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=614&fit=crop&dpr=1 600w, https://images.theconversation.com/files/451410/original/file-20220310-19-1vyj5ez.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=614&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/451410/original/file-20220310-19-1vyj5ez.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=614&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/451410/original/file-20220310-19-1vyj5ez.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=771&fit=crop&dpr=1 754w, https://images.theconversation.com/files/451410/original/file-20220310-19-1vyj5ez.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=771&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/451410/original/file-20220310-19-1vyj5ez.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=771&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
<figcaption>
<span class="caption">Baby Fae was the first successful infant xenotransplant, surviving for 20 days with a baboon heart.</span>
<span class="attribution"><a class="source" href="https://newsroom.ap.org/detail/BabyFae/a7e818231958441696f356ee12594a95">AP Photo/Duane R. Miller</a></span>
</figcaption>
</figure>
<p>Doctors have also made attempts to transplant animal hearts, the first of which predated the first human-to-human heart transplant. In 1964, a <a href="https://doi.org/10.1001/jama.1964.03060390034008">chimpanzee heart</a> transplanted by James Hardy survived for only a few hours. Len Bailey’s 1983 attempt at transplanting a <a href="https://doi.org/10.1001/jama.1985.03360230053022">baboon heart</a> into an infant known as <a href="https://time.com/4086900/baby-fae-history/">Baby Fae</a> prolonged her life for 20 days, a record at the time.</p>
<h2>Overcoming barriers</h2>
<p>While these early results may seem poor at first glance, a number of these transplants actually lasted longer than many <a href="https://doi.org/10.5772/940">early human-to-human kidney transplants</a>. The first patient to receive a donated kidney lasted for only four days in 1933, and later attempts in the 1940s and 1950s yielded similar results. Immunosuppressing drugs that prevent the immune system from attacking donor organs also weren’t available at the time of these early attempts at xenotransplantation, pointing to the promise of these procedures as science advanced. </p>
<figure>
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<figcaption><span class="caption">A pig heart under examination by researchers at the University of Pittsburgh.</span></figcaption>
</figure>
<p>But transplanting organs across species faces a number of obstacles, the most integral of which is evolution. As species grow apart, <a href="https://doi.org/10.1016/S1074-7613(01)00124-8">increasing differences</a> in their molecular makeup can result in incompatibilities that make cross-species transplant difficult or impossible. Among the most problematic are differences in immunity, inflammation and blood clotting that damage both the transplanted organs and the host’s body.</p>
<p>The similarity of <a href="https://doi.org/10.1080/08998280.2000.11927634">nonhuman primates</a> like chimpanzees and baboons to humans, both in anatomy and in their immune systems, made them appealing donors for early transplants. But their strong similarities to people also raised ethical concerns that dissuaded some physicians like Starzl from using them as donors.</p>
<p>On the other hand, <a href="https://doi.org/10.1080/08998280.2000.11927634">pigs offer a potentially better source</a> of donor organs. Compared with nonhuman primates, pigs mature much more quickly and produce more offspring. They are also a common source of food for people, and their tissues are already used for prosthetic heart valves and other medical treatments.</p>
<p>While <a href="https://doi.org/10.1016/j.ijsu.2015.06.060">pig-to-human transplants</a> have also been attempted in the past, 80 million years of evolution stood in the way. Pigs have <a href="https://doi.org/10.1080/08998280.2000.11927634">molecules</a> on the surfaces of their cells that humans do not. If these molecules are introduced into a person’s body, their human immune system will register them as foreign and mount an attack. This process, called <a href="https://medlineplus.gov/ency/article/000815.htm">hyperacute rejection</a>, is a central reason many transplanted animal organs fail.</p>
<figure>
<iframe width="440" height="260" src="https://www.youtube.com/embed/xgBnYr0_FRk?wmode=transparent&start=0" frameborder="0" allowfullscreen=""></iframe>
<figcaption><span class="caption">Genetically engineering pigs to be more compatible with humans could help reduce the risk of organ rejection.</span></figcaption>
</figure>
<p>A number of advances that reduce these incompatibilities have helped overcome the problem of hyperacute rejection. <a href="https://doi.org/10.1126/science.1078942">Genetically engineered pigs</a> without the genes that produce the foreign molecules triggering rejection and with additional <a href="https://doi.org/10.1002/mrd.21127">human genes</a> that help the recipient’s body accept the new organ are one key improvement. The <a href="https://www.nytimes.com/2022/01/10/health/heart-transplant-pig-bennett.html">pig heart</a> my team and I transplanted this year was genetically engineered, as were the <a href="https://www.nytimes.com/2021/10/19/health/kidney-transplant-pig-human.html">pig kidneys</a> from late 2021. There have also been improvements in medications that <a href="https://doi.org/10.1038/ncomms11138">suppress the immune system</a> of the recipient so it’s less likely to mount an attack against the organ.</p>
<h2>Looking forward</h2>
<p>Recent successes with genetically engineered pig transplants make clear that xenotransplantation is no longer a dream from a distant future but something becoming increasingly achievable by modern medicine.</p>
<p>But many questions still remain. What is the best way to suppress a recipient’s immune system so the transplanted organ survives but the risk of infection stays low? Can animal organs be tailored to individuals to minimize rejection? How can animal organs be better preserved and distributed? </p>
<p>Answering these and many other questions will be key to realizing the therapeutic potential of xenotransplantation, and helping the hundreds of thousands of people waiting for an organ.</p>
<p>[<em><a href="https://memberservices.theconversation.com/newsletters?nl=science&source=inline-science-corona-important">Get The Conversation’s most important coronavirus headlines, weekly in a science newsletter</a></em>]</p><img src="https://counter.theconversation.com/content/175893/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>David Kaczorowski has previously received research funding through a grant from United Therapeutics. </span></em></p>Recent successes putting genetically modified pig organs into people have brought xenotransplantation back into the spotlight.David Kaczorowski, Associate Professor of Cardiothoracic Surgery, University of PittsburghLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1662982021-09-02T15:26:17Z2021-09-02T15:26:17ZHardly any South Africans are organ donors. What can be done to change this<figure><img src="https://images.theconversation.com/files/417419/original/file-20210823-22-1e61jjr.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">The government must prioritise organ donation.</span> <span class="attribution"><span class="source">Ridofranz/Gettyimages</span></span></figcaption></figure><p>Tissue donation is an essential component in the work that surgeons and healthcare professionals do to improve the quality of life of their patients.</p>
<p>Human tissue – including bone, skin, heart valves and corneas – is used in a number of surgical applications. It can save patients with severe burns, repair torn ligaments and tendons, and help restore lost mobility. </p>
<p>At any given time, some 4,300 South Africans are in need of organ or tissue donation. Yet only around <a href="http://www.scielo.org.za/scielo.php?script=sci_arttext&pid=S0256-95742020000200015">1.4 donors per million people</a> are registered organ donors. This is much lower than Spain, the world’s <a href="https://www.euroweeklynews.com/2021/08/17/spain-leads-the-world-in-organ-donations-and-transplants/">leading country</a> as far as organ donors are concerned. The country has almost 49 organ donors per million of the population. </p>
<p>One tissue donation can save or improve the lives of more than <a href="https://www.albertahealthservices.ca/news/Page14537.aspx">65 people</a>. So it’s important to unpack and address the reasons South Africans are reluctant to register as tissue and organ donors. </p>
<p>Lack of <a href="https://www.unisa.ac.za/sites/corporate/default/Research-&-Innovation/News-&-events/Articles/SA%27s-shortage-of-organs-for-transplant-affects-thousands">awareness and understanding</a> of tissue and organ donation perpetuates ignorance and inaction. Research points to lots of <a href="https://journals.sagepub.com/doi/abs/10.1177/1526924818765819?journalCode=pit">additional factors</a>. These range from religious and cultural beliefs, to public perception, such as suspicion of the biomedical system, negative media portrayal of tissue and organ donation, as well as reports of unethical research elsewhere on the African continent. </p>
<p>South Africa has a detailed <a href="https://www.gov.za/documents/national-health-act">legal framework governing</a> the donation, removal, use and further processing of tissue and human organs. No one may be coerced, directly or indirectly, to donate tissue. And no form of undue pressure may be used to influence a person’s decision to donate. </p>
<p>The legal provisions relating to human tissue are clear. These cover the requirements for the removal, use, processing and transplantation of human tissue in detail. Those relating to organ donation are unfortunately not correctly understood. In practice donor’s wishes are often overridden by family members. </p>
<p>As it stands, potential donors must register with the Organ Donor Foundation of South Africa so that at the time of their death relevant parties are aware of their wishes. The fact that these can be overridden by family members means that the rights (and wishes) of donors are often not respected. </p>
<h2>Undue pressure, influence or coercion</h2>
<p>Organ and tissue donation is often regulated by either an “opt-in” or “opt-out” system. Spain <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3914429/">follows</a> an “opt-out” system. This means all adults are deemed to have agreed to be an organ or tissue donor when they die, unless they have recorded their decision not to donate, or belong to some of the excluded groups. </p>
<p>South Africa works on an <a href="http://www.dgmc.co.za/ContentClinical/images/pdf/f_RMHP-270234-assessing-global-organ-donation-policies--opt-in-vs-opt-out_69388.pdf">“opt-in” system</a>, as is the case in Australia, Canada and Germany. </p>
<p>There are numerous <a href="https://blogs.bmj.com/bmj/2015/05/22/ian-barker-why-we-should-all-move-to-an-opt-out-system-for-organ-donation/">benefits</a> to an “opt-out” system. The most important is that it increases the availability of organs or tissue for transplantation. </p>
<p>However, an “opt-out” system is not ideal for South Africa for a number of reasons. </p>
<p>The first is that it could run foul of the country’s constitution. A situation in which a donor is presumed to be a donor unless they say otherwise could be seen to go against an individual’s rights to personal autonomy and bodily and psychological integrity, which are protected in the constitution’s bill of rights. </p>
<p>Secondly, there are concerns that doctors and nurses would not go the extra mile to save the life of a patient if they knew it was an organ donor. </p>
<p>Thirdly, an “opt-out” donation system should ideally only be introduced in countries with high literacy levels. This is because the system relies on the ability of donors to read and write to communicate their refusal to participate in the “opt-out” system. As far as literacy levels are concerned, South Africa is <a href="https://www.indexmundi.com/g/r.aspx?c=sf&v=39">ranked</a> 104th out of 164 countries. </p>
<p>Short of changing to an “opt-out” system South Africa could take a number of steps to improve the rate of organ and tissue donation. </p>
<h2>What needs to be done</h2>
<p>Organ and tissue donation has not received the priority that it should have from the South African government. A few concrete steps would make a dramatic difference.</p>
<p>Firstly, the government needs to develop a central strategy to help alleviate uncertainties and fears – whether real or imagined – around tissue and organ donation. This will help enable South Africa to become a society that forsakes superstition in favour of sound scientific facts on how to save and improve lives.</p>
<p>Secondly, worries about <a href="https://cupola.gettysburg.edu/cgi/viewcontent.cgi?article=1660&context=student_scholarship">organ trafficking</a> and black-market transactions need to be addressed. Media coverage on organ trafficking puts organ donation and the request for donation in a negative light. </p>
<p>The crime of organ trafficking generates around <a href="https://www.gfintegrity.org/wp-content/uploads/2017/03/Transnational_Crime-final.pdf">$840 million to $1.7 billion</a> annually. Kidneys are the most commonly trafficked organ. A scandal that had international repercussions hit the headlines 20 years ago when a syndicate operating in South Africa was uncovered that had been involved in selling kidneys from hundreds of <a href="http://www.sajbl.org.za/index.php/sajbl/article/viewFile/77/49">illegal kidney transplants at hospitals in Johannesburg, Cape Town and Durban</a>. </p>
<p>The events caused a lot of <a href="https://drhre.com/tag/netcare-kidney-case/">reputational harm</a> which still lingers today.</p>
<p>Thirdly, transparent and frequent communication will slowly eradicate unnecessary fear and mistrust relating to tissue and organ donation. People need to know that it is a safe, fair, legal and ethically sound thing to do. A sustained effort to promote public awareness and education is needed. The Organ Donor Foundation and the National Department of Health should be behind the drive. </p>
<p>Fourthly, a national policy on organ and tissue procurement is critically needed. Healthcare providers in state and private hospitals must follow a uniform approach to organ and tissue procurement. </p>
<p>Fifth, South Africa also needs a national or central database and procurement agency. </p>
<p>Lastly, The National Health Act must be revised to address legal shortcomings when it comes to organ donation and respect for the wishes of donors. And regulations must be streamlined.</p><img src="https://counter.theconversation.com/content/166298/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Melodie Labuschaigne is affiliated with Bone SA.</span></em></p>One tissue donation can save or improve the lives of more than 65 people. So it’s important to unpack and address the reasons South Africans are reluctant to register as tissue and organ donors.Melodie Labuschaigne, Professor of Law, College of Law, University of South AfricaLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1324912021-04-06T21:15:44Z2021-04-06T21:15:44Z3D-printed organs could save lives by addressing the transplant shortage<figure><img src="https://images.theconversation.com/files/321742/original/file-20200319-22627-p6g975.jpg?ixlib=rb-1.1.0&rect=0%2C0%2C4810%2C3460&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">The need for donated organs can be addressed using a novel 3D-printing technique.</span> <span class="attribution"><span class="source">(Shutterstock)</span></span></figcaption></figure><p>Due to the global organ shortage and limited organ donors, thousands of patients are left wanting organs and tissues in cases of <a href="https://doi.org/10.1016/j.jmbbm.2017.11.037">severe injuries</a>, illness or genetic conditions. Many of these patients <a href="http://doi.org/10.1056/NEJM200008103430606">die before transplants are available</a>. </p>
<p>Tissue engineering is an emerging field that works on producing artificial tissue and organ substitutes as permanent solutions to replace or repair damage.</p>
<p>As biomedical engineering researchers, we are developing 3D temporary organ structures — called scaffolds — that may help regenerate damaged tissues and potentially lead to creating artificial organs. These tissues can also be used in various tissue engineering applications, including nerve repair in structures constructed from biomaterials.</p>
<h2>Printing tissue</h2>
<p>Approximately <a href="https://doi.org/10.3171/2017.11.jns171500">22.6 million patients</a> require <a href="https://doi.org/10.1016/j.pneurobio.2018.07.002">neurosurgical interventions</a> annually around the world to treat damage to the peripheral nervous system. This damage is primarily caused by traumatic events such as motor vehicle accidents, violence, workplace injuries or difficult births. It is anticipated that the cost of global nerve repair and regeneration will reach more than <a href="https://www.medgadget.com/2018/10/global-nerve-repair-and-regeneration-market-estimated-to-reach-413-million-by-2025.html">$400 million by 2025</a>.</p>
<p>Current surgical techniques allow surgeons to realign nerve ends and encourage nerve growth. However, the incidence of recovery in the injured nervous system is not guaranteed, and the return of function is almost never complete. </p>
<p>Animal studies on rats have shown that if an injury destroys <a href="https://doi.org/10.3171/jns.2005.103.6.1067">more than two centimetres of nerves</a>, the gap cannot be bridged properly and may result in the loss of muscle function or feeling. In this condition, it is important to use a scaffold to bridge two sides of the damaged nerve, specifically in case of large nerve injuries.</p>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/393603/original/file-20210406-15-rgc2a5.png?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="Illustration showing how a scaffold can bridge an injured nerve" src="https://images.theconversation.com/files/393603/original/file-20210406-15-rgc2a5.png?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/393603/original/file-20210406-15-rgc2a5.png?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=338&fit=crop&dpr=1 600w, https://images.theconversation.com/files/393603/original/file-20210406-15-rgc2a5.png?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=338&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/393603/original/file-20210406-15-rgc2a5.png?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=338&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/393603/original/file-20210406-15-rgc2a5.png?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=424&fit=crop&dpr=1 754w, https://images.theconversation.com/files/393603/original/file-20210406-15-rgc2a5.png?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=424&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/393603/original/file-20210406-15-rgc2a5.png?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=424&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
<figcaption>
<span class="caption">Large nerve injuries (larger than 2 cm) need a scaffold to act as a bridge to connect two sides of the injured nerve.</span>
<span class="attribution"><span class="source">(Saman Naghieh)</span>, <span class="license">Author provided</span></span>
</figcaption>
</figure>
<p><a href="https://doi.org/10.1016/j.bprint.2019.e00045">3D bioprinting prints 3D structures layer by layer</a>, similar to 3D printers. Using this technique, our research team created a porous structure made of the patient’s neural cells and a biomaterial to bridge an injured nerve. We used alginate — derived from algae — because the human body does not reject it.</p>
<p>While this technique has not yet been tested in people, once refined, it <a href="https://doi.org/10.1002/biot.201700635">has the potential</a> to help patients waiting for tissues and organs. </p>
<h2>Material challenges</h2>
<p>Alginate is a challenging material to work with because it collapses easily during 3D printing. Our research focuses on the development of new techniques to improve its printability.</p>
<p>For nerve repair, alginate has favourable properties for living cells growth and functions, but its poor 3D printability considerably limits its fabrication. It means that alginate flows easily during the printing process, and results in a collapsed structure. We developed a <a href="https://doi.org/10.1016/j.jmbbm.2019.02.014">fabrication method</a> where cells are contained within a porous alginate structure that is created with a 3D printer. </p>
<p>Previous research used moulding techniques to create a bulk alginate without a porous structure to improve nerve regeneration; the cells do not like such a <a href="https://doi.org/10.1089/ten.tea.2011.0097">solid environment</a>. However, 3D-printing a porous alginate structure is challenging and often impossible.</p>
<p>Our research addresses this issue by printing a porous structure made of alginate layer-by-layer rather than a moulded bulk algiante; such structure has interconnected pores and provides a cell-friendly environment. Cells can easily communicate with each other and start the regeneration while the 3D-printed alginate provides a temporary support for them.</p>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/317655/original/file-20200227-24672-1ryokob.JPG?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="an artificial ear made by a 3D printer" src="https://images.theconversation.com/files/317655/original/file-20200227-24672-1ryokob.JPG?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/317655/original/file-20200227-24672-1ryokob.JPG?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=338&fit=crop&dpr=1 600w, https://images.theconversation.com/files/317655/original/file-20200227-24672-1ryokob.JPG?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=338&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/317655/original/file-20200227-24672-1ryokob.JPG?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=338&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/317655/original/file-20200227-24672-1ryokob.JPG?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=424&fit=crop&dpr=1 754w, https://images.theconversation.com/files/317655/original/file-20200227-24672-1ryokob.JPG?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=424&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/317655/original/file-20200227-24672-1ryokob.JPG?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=424&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
<figcaption>
<span class="caption">An artificial ear fabricated by a 3D printer: from medical imaging to the creation of a customized scaffold made of biomaterial and cells.</span>
<span class="attribution"><a class="source" href="https://research.usask.ca/our-impact/highlights/images-of-research/gallery/2018/lets-create-an-artificial-organ-with-cells.php">(Saman Naghieh)</a>, <span class="license">Author provided</span></span>
</figcaption>
</figure>
<p>Researchers are going towards the <a href="https://doi.org/10.1016/j.pneurobio.2018.07.002">implementation of 3D-printed structures</a> for patients who suffer from nerve injuries as well as other injuries.</p>
<p>After the fabricated alginate structure is implanted in a patient, the big question is if it have enough mechanical stability to tolerate the forces applied by tissues in the body. We developed a <a href="https://doi.org/10.1016/j.jmbbm.2018.01.034">novel numerical model</a> to predict the mechanical behaviour of alginate structures. </p>
<p>Our studies will help to understand cell response, which is the main factor to take into account when evaluating the success of the alginate structures.</p><img src="https://counter.theconversation.com/content/132491/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Saman Naghieh works for the University of Saskatchewan. </span></em></p>Printing organs could reduce the need for human donor organs. And 3D printed organs using a patient’s own cells would increase successful organ transplants by reducing the risk of rejection.Saman Naghieh, Design Engineer & Research Assistant, University of SaskatchewanLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1535422021-01-28T22:05:17Z2021-01-28T22:05:17ZWhen is ‘dead’ really dead? What happens after a person ‘flatlines’<figure><img src="https://images.theconversation.com/files/381218/original/file-20210128-13-1sfbov7.jpg?ixlib=rb-1.1.0&rect=569%2C34%2C3265%2C2115&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">New research shows that heart activity may not always end with a flatlined monitor.</span> <span class="attribution"><span class="source">(Shutterstock)</span></span></figcaption></figure><p>How long should doctors wait after a “flatline” appears before they can declare a person dead? How can they be sure that heartbeat and circulation will not return? </p>
<p>The <a href="https://doi.org/10.1503/cmaj.130271">most common way that people die is after their heart stops beating</a>. However, there is limited evidence for <a href="https://doi.org/10.1177/0885066610396993">how long to wait to determine death once the heart stops</a>. This missing information has repercussions for clinical practice and for organ donation.</p>
<p>A fundamental principle of organ donation is <a href="https://doi.org/10.1007/s11019-019-09904-8">the dead donor rule</a>: donors must be dead prior to recovery of organs, and organ recovery must not be the cause of death. A lack of evidence about how long to wait before declaring death creates a tension: if doctors wait too long after the heart stops, the quality of organs begins to decline.</p>
<p>On the other hand, not waiting long enough introduces the risk of going ahead with organ recovery before death has actually occurred.</p>
<p>Our <a href="http://www.ddepict.com/core-study-team.html">interdisciplinary team</a> of doctors, bio-engineers and experienced clinical researchers has spent the past decade studying what happens when a person dies after their heart stops. We focused on patients in the intensive care unit who died after life support was withdrawn, since these patients may also be eligible for organ donation.</p>
<p>In particular, we were interested in <a href="http://www.ddepict.com/ddepict-program.html">understanding whether it is possible for the heart to restart on its own</a>, without any interventions like cardiopulmonary resuscitation (CPR) or medication.</p>
<h2>A closer look at end-of-life flatline</h2>
<p>Our recent study, <a href="https://doi.org/10.1056/NEJMoa2022713">published in the <em>New England Journal of Medicine</em></a>, presents observations of the dying process of 631 patients across Canada, the Czech Republic and the Netherlands who died in an intensive care unit. All patients’ families consented to participate in the research.</p>
<p>In addition to collecting medical information about each patient, <a href="http://www.ddepict.com/the-deppart-waveform-viewer.html">we built a computer program</a> to capture and review heart rate, blood pressure, blood oxygenation level and respiratory patterns directly from bedside monitors. As a result, we were able to analyze end-of-life flatline patterns for 480 out of 631 patients — including looking at whether and when any circulation or heart activity returned after stopping for at least one minute.</p>
<figure>
<iframe width="440" height="260" src="https://www.youtube.com/embed/JQ5RtP7Ec9Y?wmode=transparent&start=0" frameborder="0" allowfullscreen=""></iframe>
<figcaption><span class="caption">This video shows arterial blood pressure and electrocardiogram signals stop for 64 seconds before resuming, and finally stopping nearly three minutes later. Video is sped up eight times.</span></figcaption>
</figure>
<p>As it turns out, the classic flatline of death is not so straightforward. We found that human heart activity often stops and restarts a number of times during a normal dying process. </p>
<p>Out of 480 “flatline” signals reviewed, we found a stop-and-start pattern in 67 (14 per cent). The longest that the heart stopped before restarting on its own was four minutes and 20 seconds. The longest time that heart activity continued after restarting was 27 minutes, but most restarts lasted just one to two seconds. None of the patients we observed survived or regained consciousness.</p>
<p>We also found it was common for the heart to continue to show electrical activity long after blood flow or pulse stopped. The human heart functions as a result of an electrical stimulation of nerves that causes the heart muscle to contract and contribute to blood flow — the pulse you can feel in your arteries and veins. </p>
<p>We found that the heart rate (electrical stimulation leading to movement of the heart muscle) and pulse (movement of blood in the veins) only stopped together in 19 per cent of patients. In some cases, electrical activity of the heart continued for over 30 minutes without resulting in any circulation of blood.</p>
<h2>Why understanding death matters</h2>
<p>The results of our study are important for a few reasons.</p>
<p>First, the observation that stops and restarts of heart activity and circulation are often part of the natural process of dying will be reassuring to doctors, nurses and family members at the bedside. Intermittent signals on bedside monitors can sometimes be alarming if observers interpret them as signs that life is unexpectedly returning. Our study provides evidence that stops and starts are to be expected during a normal dying process without CPR, and that they do not lead to regained consciousness or survival.</p>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/381148/original/file-20210128-21-1nyt6wv.png?ixlib=rb-1.1.0&rect=508%2C0%2C504%2C197&q=45&auto=format&w=1000&fit=clip"><img alt="Heart monitor readout" src="https://images.theconversation.com/files/381148/original/file-20210128-21-1nyt6wv.png?ixlib=rb-1.1.0&rect=508%2C0%2C504%2C197&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/381148/original/file-20210128-21-1nyt6wv.png?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=103&fit=crop&dpr=1 600w, https://images.theconversation.com/files/381148/original/file-20210128-21-1nyt6wv.png?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=103&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/381148/original/file-20210128-21-1nyt6wv.png?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=103&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/381148/original/file-20210128-21-1nyt6wv.png?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=129&fit=crop&dpr=1 754w, https://images.theconversation.com/files/381148/original/file-20210128-21-1nyt6wv.png?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=129&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/381148/original/file-20210128-21-1nyt6wv.png?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=129&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
<figcaption>
<span class="caption">Flatline resumption: heart activity stops and starts during the natural process of dying.</span>
<span class="attribution"><span class="license">Author provided</span></span>
</figcaption>
</figure>
<p>Second, our finding that the longest pause before heart activity restarted on its own was four minutes and 20 seconds supports the current practice of <a href="https://doi.org/10.1503/cmaj.060895">waiting five minutes after circulation stops before declaring death and proceeding to organ recovery</a>. This helps to reassure organ donation organizations that practices of determination of death are safe and appropriate.</p>
<p>Our results will be used to better inform policy and guidelines for the practice of organ donation internationally. For donation systems to work, when someone is declared dead, there must be trust that the declaration is really true. Trust allows families to <a href="https://torontoobserver.ca/2011/03/30/family-learns-the-bitter-sweet-value-of-organ-donation/">choose donation in a time of grief</a> and allows the medical community to ensure safe and consistent end of life care.</p>
<p>This study is also important for improving our broader understanding of the natural history of death. We have shown that figuring out when dead is really dead is perhaps not so simple. It requires careful observation and close physiologic monitoring of the patient. In addition, it requires an understanding that, just as in life, there are many patterns that the dying process can take. </p>
<p>Our work is a step towards appreciating the complexity of dying and suggests we must move beyond the idea of a straightforward flatline to indicate when death has occurred.</p>
<p><em>This article was co-authored by Laura Hornby, research manager and consultant at the Children’s Hospital of Eastern Ontario Research Institute and Canadian Blood Services, and Nathan Scales, biomedical engineer and research associate at the Dynamical Analysis Lab at the Ottawa Hospital Research Institute.</em></p><img src="https://counter.theconversation.com/content/153542/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Amanda van Beinum receives funding from The Social Sciences and Humanities Research Council.</span></em></p><p class="fine-print"><em><span>Sonny Dhanani is Chair of the Deceased Donation Advisory Committee at Canadian Blood Services, and Associate Director - Donation of the Canadian Donation and Transplant Research Network. </span></em></p>Is a person dead when their heart stops beating? It turns out that the classic “flatline” of death is not so straightforward.Amanda van Beinum, PhD Candidate, Sociology, Carleton UniversitySonny Dhanani, Associate Professor, Faculty of Medicine, L’Université d’Ottawa/University of OttawaLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1527942021-01-17T13:49:18Z2021-01-17T13:49:18ZOpt-out organ donation: Is Nova Scotia’s new ‘deemed consent’ law ethical?<figure><img src="https://images.theconversation.com/files/378752/original/file-20210114-16-12a5teg.jpg?ixlib=rb-1.1.0&rect=152%2C1131%2C5730%2C2227&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Deemed consent, or 'opt-in,' organ donation is a significant departure from the practices of health-care consent in Canada.</span> <span class="attribution"><span class="source">(Shutterstock)</span></span></figcaption></figure><p>In January 2021, Nova Scotia will become the first place in Canada to have “<a href="https://nslegislature.ca/legc/bills/63rd_2nd/1st_read/b133.htm">deemed consent</a>” for organ donation. Under this law, it will be assumed that people who don’t document their wishes about organ donation have consented to becoming organ donors. This is sometimes called an “opt-out” system, and is used in some European countries. </p>
<p>This is a significant departure from the usual practices around consent in health care in Canada. As a clinical ethicist with research interests in how we respond to inequity, I have concerns about whether potential negative effects on respect for personal choice can be justified.</p>
<h2>The ethics of public health</h2>
<p>The <a href="https://doi.org/10.1007/BF03404547">principle of using the least restrictive means</a> in public health ethics means selecting the strategy that puts the fewest constraints on individual liberty. Justifying deemed consent under this principle would require evidence that it will increase the supply of donor organs, as well as evidence to prove that there is no way to achieve that increase without using deemed consent. </p>
<p>I argue here that the second requirement has not been met. If there are ways to increase organ donation without the risk of limiting individual rights, then the principle of least restrictive means guides us to pursue those strategies first.</p>
<figure>
<iframe width="440" height="260" src="https://www.youtube.com/embed/-x5FcBjO2M0?wmode=transparent&start=0" frameborder="0" allowfullscreen=""></iframe>
<figcaption><span class="caption">Other strategies to increase organ donation include mandated choice, which requires people to actively opt in or opt out.</span></figcaption>
</figure>
<p>There are concerns that personal freedom will be negatively affected by the Nova Scotia law, as well as worries about <a href="https://impactethics.ca/2019/05/07/at-what-cost-presumed-consent-for-organ-donation/">who will be affected</a>. </p>
<p>Here’s a fictional example: Ash, 37, arrived in Nova Scotia before the new organ donation law came into effect and doesn’t realize that the law changed. Ash has strong beliefs about not wanting to be an organ donor, but Ash has never discussed them with their partner or friends. Ash is involved in a collision and their injuries are serious. Because of deemed consent, they are identified as a candidate for organ donation. After consultation with Ash’s partner, donation proceeds. </p>
<p>The donation harms Ash because it goes against what Ash wanted to happen to their body after their death. This harm only occurred because deemed consent was in place. And individuals who do not have family or friends to speak on their behalf are at greater risk of their wishes not being respected when they have not expressed them directly. </p>
<figure class="align-center ">
<img alt="Illustration of a Human Organ cooler, paperwork and donor organs" src="https://images.theconversation.com/files/378999/original/file-20210115-17-1tzmq57.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/378999/original/file-20210115-17-1tzmq57.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=316&fit=crop&dpr=1 600w, https://images.theconversation.com/files/378999/original/file-20210115-17-1tzmq57.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=316&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/378999/original/file-20210115-17-1tzmq57.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=316&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/378999/original/file-20210115-17-1tzmq57.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=398&fit=crop&dpr=1 754w, https://images.theconversation.com/files/378999/original/file-20210115-17-1tzmq57.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=398&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/378999/original/file-20210115-17-1tzmq57.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=398&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">Deemed consent for organ donation is a significant departure from the usual practices around consent in health care in Canada.</span>
<span class="attribution"><span class="source">(Shutterstock)</span></span>
</figcaption>
</figure>
<p>In addition, deemed consent assumes that individuals know that they are living in a jurisdiction where they need to indicate their wish not to be a donor. This is very different from how we approach other health-care decisions, where clear and affirmative consent is required. </p>
<p>Groups that are harder to reach with health messaging — such as newcomers to Canada, those with precarious living situations or people with lower levels of education — will be at greater risk of not knowing how to ensure their organs are not donated against their wishes. And given the ongoing pandemic there are <a href="https://www.halifaxexaminer.ca/province-house/ethicists-province-should-put-opt-out-organ-donation-plan-on-hold/">worries about the feasibility</a> of ensuring that decisions around organ donation are informed. </p>
<p>It is not clear that these significant costs are absolutely necessary.</p>
<p>During the COVID-19 pandemic, the principle of least restrictive means has often come up in discussion of travel restrictions and <a href="https://www.theatlantic.com/ideas/archive/2020/03/why-theres-no-national-lockdown/609127/">widespread lockdowns</a>. It is equally relevant when assessing policies aimed at increasing rates of organ donation.</p>
<p>In addition to bringing in deemed consent, Nova Scotia’s law increases resources for donation programs and improves efficiency of donation processes. These strategies are more aligned with the principle of least restrictive means than deemed consent is. A move to deemed consent could be more easily supported if attempts to improve processes had already been tried and had failed to increase organ donor registration.</p>
<h2>Nudges and vetoes</h2>
<p>If we were in a situation where evidence was limited or uncertain, there might be legitimate debate about whether or not the Nova Scotia law is using the least restrictive means. But this is not the case. </p>
<p><a href="https://www.ontario.ca/page/behavioural-insights-pilot-project-organ-donor-registration">Research in Ontario</a> indicates that registration rates can be significantly increased with the <a href="https://doi.org/10.1080/15265161.2019.1588411">use of “nudges.”</a> Putting the question, “How would you feel if you or a loved one needed a transplant and couldn’t get one?” on the top of donation forms affected behaviour. Nudging like this does not affect requirements for explicit consent. Other less restrictive options include <a href="http://dx.doi.org/10.1136/jme.29.3.157">mandated choice</a>, which could require people to opt in or opt out whenever they renew their health card. </p>
<p>Less restrictive measures like this should be adopted before moving to deemed consent, especially in the absence of conclusive evidence that deemed consent systems are the only strategy that will adequately increase supply of donor organs. </p>
<figure class="align-right ">
<img alt="Illustration of human organs against a dark blue backdrop" src="https://images.theconversation.com/files/379000/original/file-20210115-23-1ok5cg2.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=237&fit=clip" srcset="https://images.theconversation.com/files/379000/original/file-20210115-23-1ok5cg2.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=720&fit=crop&dpr=1 600w, https://images.theconversation.com/files/379000/original/file-20210115-23-1ok5cg2.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=720&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/379000/original/file-20210115-23-1ok5cg2.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=720&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/379000/original/file-20210115-23-1ok5cg2.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=905&fit=crop&dpr=1 754w, https://images.theconversation.com/files/379000/original/file-20210115-23-1ok5cg2.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=905&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/379000/original/file-20210115-23-1ok5cg2.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=905&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">Less-restrictive measures should be adopted before moving to deemed consent.</span>
<span class="attribution"><span class="source">(Shutterstock)</span></span>
</figcaption>
</figure>
<p>Another significant barrier to organ donation is <a href="https://doi.org/10.1007/s10198-020-01214-8">families’ ability to “veto”</a> expressed decisions around donation. Concern has been raised that this would be worse under a deemed consent system. The argument is that there will be <a href="https://dx.doi.org/10.1177/1751143717694916">greater uncertainty about a person’s wishes</a> and so it will be harder to show that vetoing organ donation is going against their wishes.</p>
<p>Respecting family vetoes (<a href="https://doi.org/10.1503/cmaj.160752">even when this goes against legislation</a>) reflects the value of compassion for bereaved families. When deemed consent is being considered, these commitments need to be weighed against harm to respect for individual autonomy. To satisfy the principle of the least restrictive means, organ donation strategies should address family vetoes (and other similar barriers) before moving to options that carry a greater risk of limiting individual autonomy. </p>
<p>It is not evident from the evidence that a deemed consent organ donation system is the least restrictive means available to increase the supply of donor organs. We would first need to demonstrate that improving existing processes, the use of nudges, mandated choice, addressing family vetoes and strategies like <a href="http://dx.doi.org/10.1136/jme.2009.032912">advanced commitment</a> or <a href="https://doi.org/10.1093/jlb/lsy009">incentives</a> cannot adequately increase rates of organ donation. Then, and only then, would a move to deemed consent be justified. Until such evidence is available the principle of the least restrictive means prompts us to make efforts to increase donation rates in ways that are more respectful of individual choice.</p><img src="https://counter.theconversation.com/content/152794/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Marika Warren does not work for, consult, own shares in or receive funding from any company or organisation that would benefit from this article, and has disclosed no relevant affiliations beyond their academic appointment.</span></em></p>Deemed consent organ donation means that everyone is assumed to be an organ donor unless they opt out, but assuming consent raises some ethical issues.Marika Warren, Assistant Professor, Department of Bioethics, Faculty of Medicine, Dalhousie UniversityLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1450882020-09-09T21:23:40Z2020-09-09T21:23:40ZAn opt-out organ donor system could address Canada’s shortage of organs for transplant<figure><img src="https://images.theconversation.com/files/357316/original/file-20200909-24-1r85pz3.jpg?ixlib=rb-1.1.0&rect=498%2C188%2C4430%2C3175&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Eighty-five per cent of Ontarians support organ donation, but only one-third have opted in under the current system.</span> <span class="attribution"><span class="source">(Shutterstock)</span></span></figcaption></figure><p>In 2018, there were <a href="https://www.cihi.ca/en/organ-replacement-in-canada-corr-annual-statistics-2019#:%7E:text=At%20the%20end%20of%202018,while%20waiting%20for%20a%20transplant">4,351 Canadians on waiting lists</a> for an organ transplant. In the same year, 223 Canadians died while awaiting organ transplants. </p>
<p>These numbers have been growing over the last decade. For example, between 2009 and 2019, the number of <a href="https://www.cihi.ca/sites/default/files/document/corr-snapshot-2019-en.pdf">Canadians in end-stage renal failure increased by 35 per cent</a>, significantly raising the number of individuals requiring kidney transplants. The situation is only expected to worsen, as it is anticipated that <a href="https://doi.org/10.1186/s12882-017-0699-y">more Canadians will require organ transplants over the coming years</a>.</p>
<figure class="align-right zoomable">
<a href="https://images.theconversation.com/files/356502/original/file-20200904-16-9nqn3j.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="Cross-sectional illustration of a human kidney" src="https://images.theconversation.com/files/356502/original/file-20200904-16-9nqn3j.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=237&fit=clip" srcset="https://images.theconversation.com/files/356502/original/file-20200904-16-9nqn3j.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=911&fit=crop&dpr=1 600w, https://images.theconversation.com/files/356502/original/file-20200904-16-9nqn3j.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=911&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/356502/original/file-20200904-16-9nqn3j.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=911&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/356502/original/file-20200904-16-9nqn3j.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=1144&fit=crop&dpr=1 754w, https://images.theconversation.com/files/356502/original/file-20200904-16-9nqn3j.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=1144&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/356502/original/file-20200904-16-9nqn3j.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=1144&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
<figcaption>
<span class="caption">End-stage kidney disease increased by more than 35 per cent in Canada between 2009 and 2019.</span>
<span class="attribution"><span class="source">(Pixabay)</span></span>
</figcaption>
</figure>
<p>In the backdrop of these sobering statistics, Nova Scotia is set to become the first jurisdiction in North America to enact legislation to tackle the shortage of organs for transplant. Passed on April 2, 2019, the <a href="https://nslegislature.ca/legc/bills/63rd_2nd/1st_read/b133.htm">Human Organ and Tissue Act</a> is scheduled to come into effect on Jan. 18, 2021. </p>
<p>The act institutes an “opt-out” system to organ donation, which functions on the idea of presumed consent. In its essence, this idea presumes that individuals have consented to having their organs harvested upon their death for transplantation into others in need of those organs. </p>
<p>Nova Scotia’s opt-out system goes against prevailing practice in Canada. Currently, organ donation is based on the “opt-in” system, in which individuals must sign up to be organ donors while they are alive in order for their organs to be harvested for transplantation upon their death.</p>
<h2>The case for presumed consent</h2>
<p>There is ample evidence to substantiate the effectiveness of presumed consent policy. Take the case of Spain, the country with the most robust opt-out system, which it established over 40 years ago. In 2019, <a href="https://www.healio.com/news/nephrology/20200605/presumed-consent-helpful-for-increasing-transplants-in-spain-but-challenges-remain">Spain had 49 deceased organ donors per million population</a> — by far the highest in the world. This compares to Canada’s paltry rate of 20.6 per million population on the same measure.</p>
<p>Despite Canada’s lagging donation indicators, most Canadians support organ donation. For example, <a href="https://www.giftoflife.on.ca/en/">85 per cent of Ontarians support donation</a>, although only one-third have opted-in to the current system. </p>
<p>This discrepancy has been attributed to apathy in registering as a donor rather than <a href="https://dx.doi.org/10.1177%2F1751143718777171">serious moral objections to donating posthumously</a>. If surveys of public opinion are correct, then an opt-out system would get it right more times than it gets it wrong when making assumptions about individuals’ wishes. </p>
<h2>Moral objections</h2>
<p>Those who object to organ donation for religious or other reasons are more likely to make their wishes known in an opt-out system as compared to those wishing to donate for altruistic reasons, who are <a href="https://doi.org/10.1076/jmep.29.1.37.30412">less likely to make their preferences clear in an opt-in system</a>. </p>
<p>In a system designed to save more lives, putting the onus on those who object to donation to opt-out is not only morally justified, but follows other initiatives in which public interest is placed at the forefront of policy. For instance, the introduction of mandatory seat-belt laws have often come under fire for infringing on individual autonomy, but the prevailing benefit to public interest has resulted in a now <a href="https://doi.org/10.1093/phe/phz014">widely accepted legal and social norm</a>. </p>
<figure class="align-center ">
<img alt="Illustration of kidneys, heart, lungs and liver with a green ribbon, symbol for organ donation support" src="https://images.theconversation.com/files/356585/original/file-20200904-18-1gi4d07.png?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/356585/original/file-20200904-18-1gi4d07.png?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=140&fit=crop&dpr=1 600w, https://images.theconversation.com/files/356585/original/file-20200904-18-1gi4d07.png?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=140&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/356585/original/file-20200904-18-1gi4d07.png?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=140&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/356585/original/file-20200904-18-1gi4d07.png?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=176&fit=crop&dpr=1 754w, https://images.theconversation.com/files/356585/original/file-20200904-18-1gi4d07.png?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=176&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/356585/original/file-20200904-18-1gi4d07.png?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=176&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">Eighty-five per cent of Ontarians support organ donation, but only one-third have opted in to the current system.</span>
<span class="attribution"><span class="source">(Canva)</span></span>
</figcaption>
</figure>
<p>Policy debates over whether a jurisdiction ought to have an opt-out versus on opt-in system to organ transplantation are replete with thorny ethical questions. There are usually no simple, clear-cut answers and not all members of the public will be satisfied with any decision reached. </p>
<p>But given the number of Canadians detrimentally affected by types of organ failure that can be medically remedied through transplantation, the country has an ethical responsibility to consider how best to approach the ongoing shortage of donor organs.</p>
<h2>Lowering costs while saving lives</h2>
<p>Beyond the moral reasons for instituting an opt-out system, there are financial incentives too. For example, where it concerns end-stage renal failure, the British Columbia Renal Agency found that the <a href="http://www.bcrenalagency.ca/resource-gallery/Documents/Transplant%20and%20recipient%20eligibility.pdf">annual cost of dialysis treatment is $50,000 per person</a>. This is meaningfully higher than the cost of kidney transplantation, which has a <a href="http://www.bcrenalagency.ca/resource-gallery/Documents/Transplant%20and%20recipient%20eligibility.pdf">one-time associated price tag of $15,000 and $5,500 per year for anti-rejection drugs</a>. </p>
<p>To be sure, it would be wholly unreasonable to expect Nova Scotia’s new act to be implemented without any hiccups. There will likely be unforeseen, complex and difficult issues that emerge as the province begins to put the act into operation in the coming weeks. Moreover, as evidence from jurisdictions that have established presumed consent policy reveals, the effects of the opt-out policy are tenuous unless <a href="https://doi.org/10.3399/bjgp18X694445">sufficient financial and political support buttress it</a>. </p>
<p>While there may be challenges, instituting policy on organ harvesting based on presumed consent could be an important initial step in addressing the ever-growing shortage of organ donors in the country. Other provinces in Canada ought to pay close attention to the forthcoming experiment in Nova Scotia, and consider how their own jurisdictions might respond to the shortage of organ donors — a phenomenon that is causing many avoidable deaths and much unnecessary suffering to Canadians.</p>
<p><em>This is a corrected version of a story originally published Sept. 9, 2020. The earlier story incorrectly stated that the opt-out program would take effect on Oct. 1, 2020.</em></p><img src="https://counter.theconversation.com/content/145088/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Ajnesh Prasad receives funding from the Social Sciences and Humanities Research Council and the Canada Research Chairs program. </span></em></p><p class="fine-print"><em><span>Karly Nygaard-Petersen does not work for, consult, own shares in or receive funding from any company or organisation that would benefit from this article, and has disclosed no relevant affiliations beyond their academic appointment.</span></em></p>Thousands of Canadians are on waiting lists for life-saving organ transplants. An opt-out organ donor system, like the one Nova Scotia is implementing, could reduce avoidable deaths and suffering.Ajnesh Prasad, Professor & Canada Research Chair, School of Business, Royal Roads UniversityKarly Nygaard-Petersen, Doctoral student, School of Business, Royal Roads UniversityLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1249932019-10-13T19:02:20Z2019-10-13T19:02:20ZOrgans ‘too risky’ to donate may be safer than we think. We crunched the numbers and here’s what we found<figure><img src="https://images.theconversation.com/files/296582/original/file-20191011-188829-1xxdbsn.jpg?ixlib=rb-1.1.0&rect=4%2C5%2C994%2C660&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Accepting a donor kidney with a small risk of carrying HIV or hepatitis B or C might be worth thinking about.</span> <span class="attribution"><a class="source" href="https://www.shutterstock.com/download/confirm/759443860?src=-Yku0Hm6B8U7E0GT9EdjXQ-1-2&size=medium_jpg">from www.shutterstock.com</a></span></figcaption></figure><p>Organs from potential donors once rejected as being unsafe to transplant may not be as risky as once thought, new Australian research shows.</p>
<p>Our study, <a href="https://onlinelibrary.wiley.com/doi/10.5694/mja2.50315">published</a> in the Medical Journal of Australia, suggests organs from injecting drug users or men who have sex with men, for instance, could safely open up the pool of available organs. That’s so long as donors test negative for blood-borne infections, such as HIV, and hepatitis B and C.</p>
<p>Currently, organs from this and other groups considered high risk are often rejected outright, for fear of transmitting hidden infections to the recipient.</p>
<p>If transplant criteria were based on viral status rather than belonging to a particular group, we estimate this could mean up to 30 more people could receive a transplant a year in NSW alone.</p>
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<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/why-are-only-some-viruses-transmissible-by-blood-and-how-are-they-actually-spread-75460">Why are only some viruses transmissible by blood and how are they actually spread?</a>
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<h2>Which high-risk groups are usually rejected as donors?</h2>
<p>Many infections can potentially be transmitted as a result of an organ transplant. But this happens <a href="https://www.notifylibrary.org/sites/default/files/UNOS%20DTAC%20rpt.pdf">very rarely</a> due to strict governance, involving careful screening and selection of donors.</p>
<p>Blood-borne viruses, such as hepatitis B, hepatitis C or HIV, are a particular concern, because historically these had the most potential to have devastating consequences for the organ recipient.</p>
<p>Some potential organ donors have behaviours that put them at increased risk of infection. <a href="https://www.tsanz.com.au/TSANZ_Clinical_Guidelines_Version%201.3%5B6986%5D.pdf">National</a> and <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3675207/">international guidelines</a> perceive high-risk groups for these viruses to include:</p>
<ul>
<li><p>people who inject illicit drugs</p></li>
<li><p>men who have sex with men</p></li>
<li><p>sex workers</p></li>
<li><p>people who have recently been in jail</p></li>
<li><p>sexual partners of any of these groups, or of people with a blood-borne virus. </p></li>
</ul>
<p>People from these groups are <a href="https://www.tsanz.com.au/TSANZ_Clinical_Guidelines_Version%201.3%5B6986%5D.pdf">often declined</a> as organ donors, even when tests for blood-borne viruses are negative, and sometimes without even being tested.</p>
<p>That’s because of the worry about the risk of the donor being recently infected but that infection not yet showing up in blood tests. This is know as the “window period”. If a window-period infection occurred, people could unwittingly transmit the virus.</p>
<h2>When we used Australian data, here’s what we found</h2>
<p>So how big a risk are we talking about? </p>
<p>Until recently, Australian guidelines have relied on US estimates of risk, although there are important differences in the prevalence of blood borne viruses in the US and elsewhere compared with Australia.</p>
<p>We believed the risk of window-period infection in Australia was likely to be lower, possibly much lower, than was appreciated. So, we were concerned some potential donors might be turned away who could actually have donated safely. </p>
<p>So, we identified data from sources including journal articles, government reports and conference abstracts between Jan 1, 2000 and Feb 14, 2019 to see how common blood-borne viruses were in people with high-risk behaviours in Australia.</p>
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<em>
<strong>
Read more:
<a href="https://theconversation.com/charlie-sheen-and-ten-million-dollars-worth-of-hiv-stigma-50909">Charlie Sheen and ten million dollars worth of HIV stigma</a>
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<p>We found, as expected, men who have sex with men have the highest risk of HIV in Australia. But for each person who tests negative for HIV, the risk of transmitting the virus was around one in 6,500. This is lower than the US estimate, which sits at <a href="https://www.ncbi.nlm.nih.gov/pubmed/21366859">one in 2,500</a>. The difference was more pronounced for injecting drug users in Australia, where one in 50,000 would have a window period infection, compared to one in 2,000 in the US.</p>
<p>The window period risk was higher for hepatitis C. Among the riskiest groups, this was around one in 500, similar to overseas studies. There were no studies overseas to compare to for hepatitis B. We found the risk of a window period infection was at most one in 200 from the riskiest group (although we may being cautious and over-estimating this risk).</p>
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<em>
<strong>
Read more:
<a href="https://theconversation.com/explainer-the-a-b-c-d-and-e-of-hepatitis-54739">Explainer: the A, B, C, D and E of hepatitis</a>
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<h2>What does this mean?</h2>
<p>First, we suggest all potential organ donors with high-risk behaviours be assessed with the test that gives the shortest window period, to minimise the chance of missing a recent infection.</p>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/296585/original/file-20191011-188787-1ol4zcf.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="" src="https://images.theconversation.com/files/296585/original/file-20191011-188787-1ol4zcf.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/296585/original/file-20191011-188787-1ol4zcf.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=401&fit=crop&dpr=1 600w, https://images.theconversation.com/files/296585/original/file-20191011-188787-1ol4zcf.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=401&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/296585/original/file-20191011-188787-1ol4zcf.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=401&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/296585/original/file-20191011-188787-1ol4zcf.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=504&fit=crop&dpr=1 754w, https://images.theconversation.com/files/296585/original/file-20191011-188787-1ol4zcf.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=504&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/296585/original/file-20191011-188787-1ol4zcf.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=504&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
<figcaption>
<span class="caption">All potential donors with an increased risk of infection should have blood tests, then their risk of transmission assessed.</span>
<span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/medical-equipment-blood-test-327930539?src=6asbIJsvdt2r3mY2bLXUQg-1-3">from www.shutterstock.com</a></span>
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<p>This means testing for the presence of the virus itself (via DNA or RNA testing) rather than relying on tests that look for markers of infection (serological testing).</p>
<p>For potential donors who test negative, our data can be used to help clinicians put the small risks of infection transmission in context for organ recipients. </p>
<h2>What’s the alternative?</h2>
<p>For most people, an organ transplant is the best treatment for organ failure and can be life-saving. </p>
<p>For people with <a href="https://kidney.org.au/cms_uploads/docs/kha-economic-impact-of-eskd-in-australia-projections-2020.pdf">kidney failure</a>, the alternative is dialysis. But this gives shorter survival, poorer quality of life, and incurs higher costs to the health system than treatment with a kidney transplant. For the heart, liver and lungs, there are no other long-term options; without a transplant, people whose organs fail will eventually die.</p>
<p>But there are not enough organ donors to go round. Around <a href="https://www.anzdata.org.au/anzod/reports/organ-waiting-list/">1,500 Australians</a> are waiting for a transplant.</p>
<p>Even so, the option of receiving a donor organ with even a very small risk of transmitting infection may not seem immediately appealing. But this needs to be balanced against the considerable health consequences of foregoing a transplant and remaining on the waiting list.</p>
<figure class="align-center zoomable">
<a href="https://images.theconversation.com/files/296346/original/file-20191010-188797-1n6jsoi.jpg?ixlib=rb-1.1.0&rect=2%2C1%2C995%2C661&q=45&auto=format&w=1000&fit=clip"><img alt="" src="https://images.theconversation.com/files/296346/original/file-20191010-188797-1n6jsoi.jpg?ixlib=rb-1.1.0&rect=2%2C1%2C995%2C661&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/296346/original/file-20191010-188797-1n6jsoi.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=398&fit=crop&dpr=1 600w, https://images.theconversation.com/files/296346/original/file-20191010-188797-1n6jsoi.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=398&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/296346/original/file-20191010-188797-1n6jsoi.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=398&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/296346/original/file-20191010-188797-1n6jsoi.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=501&fit=crop&dpr=1 754w, https://images.theconversation.com/files/296346/original/file-20191010-188797-1n6jsoi.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=501&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/296346/original/file-20191010-188797-1n6jsoi.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=501&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
<figcaption>
<span class="caption">For most people, an organ transplant is the best treatment for organ failure and can be life-saving.</span>
<span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/doctor-brings-organ-donation-transplantation-op-1045064908?src=oJ8mad2oFr6KYz17_jTfoQ-1-0">from www.shutterstock.com</a></span>
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<p><a href="https://www.anzdata.org.au/report/anzod-annual-report-2019/">In 2018 in Australia</a> there were 554 deceased donors who donated organs to 1,543 transplant recipients. Over the same period, 39 people died while waiting for a transplant, and a further 236 were removed from the waiting list due to ill health.</p>
<p>Even with our newly calculated low risk of transmission, there are ways of minimising the risks further, or with new treatments, curing the viral infections if they are transmitted.</p>
<p>For instance, with HIV, medications could be provided to recipients, to further reduce the risk of transmission. If the recipient develops hepatitis C, there are now drugs that can cure it completely. And, for hepatitis B, many people are now vaccinated, which prevents transmission. </p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/three-ethical-ways-to-increase-organ-donation-in-australia-42744">Three ethical ways to increase organ donation in Australia</a>
</strong>
</em>
</p>
<hr>
<h2>What’s happening internationally?</h2>
<p>Donors at increased risk of blood-borne viruses are used internationally. </p>
<p>In the US, <a href="https://www.cdc.gov/mmwr/volumes/68/wr/mm6803a2.htm">over 25% of organ donors</a> now fit these criteria, mainly due to the opioid epidemic and associated increased deaths from overdose.</p>
<p>This strategy has led to <a href="https://optn.transplant.hrsa.gov/news/unexpected-hcv-donor-derived-transmissions-on-the-rise/">an increase</a> in hepatitis C transmissions from donors to recipients. But hepatitis C can be cured with an <a href="https://annals.org/aim/article-abstract/2696495/twelve-month-outcomes-after-transplant-hepatitis-c-infected-kidneys-uninfected">eight-week course of treatment</a>, even among transplant recipients.</p>
<p>Researchers have also shown an <a href="https://www.ncbi.nlm.nih.gov/pubmed/29116674">increase in survival</a> for patients who accepted kidneys from people at increased risk of viral infection compared to those who opted to remain on the waiting list. </p>
<h2>Does this mean more people could have transplants?</h2>
<p>So could our work make a tangible impact on the number of Australians receiving transplants? </p>
<p>Our preliminary work suggests there could have been up to a <a href="https://onlinelibrary.wiley.com/doi/epdf/10.1111/nep.12887">5% increase in donors in NSW</a> alone between 2010-2015, if we had accepted donors with risk behaviours but negative test results. There could have been five more donors a year, who can each donate to up to six recipients (so up to 30 additional recipients a year). </p>
<p>Our early results on the risk of infection were recently incorporated into <a href="https://www.tsanz.com.au/TSANZ_Clinical_Guidelines_Version%201.3%5B6986%5D.pdf">national guidelines</a> produced by the Transplantation Society of Australia and New Zealand for organ transplantation. </p>
<p>In Victoria, people waiting for a kidney transplant <a href="https://journals.lww.com/transplantationdirect/Fulltext/2019/04001/Abstracts_of_the_Conference_Connecting_Donation.2.aspx">can now consent</a> to receiving organs with these risks when they are put on the waiting list. </p>
<p>We hope our research sparks discussion among patients and doctors to consider what risks are important to patients, and where their values and preferences lie. Better evidence for decision-making should certainly help.</p><img src="https://counter.theconversation.com/content/124993/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Karen Waller receives funding from the National Health and Medical Research Council (NHMRC).</span></em></p><p class="fine-print"><em><span>Angela Webster receives research funding from Sydney Health Partners, the NHMRC, Kidney Health Australia, and the NSW Ministry of Health.</span></em></p>Organs from gay men or injecting drug users, often rejected for transplants, could safely be used, so long as donors test negative for infections such as HIV, and hepatitis B and C.Karen Waller, PhD candidate, University of SydneyAngela Webster, Professor of Clinical Epidemiology, University of SydneyLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1218432019-08-20T14:18:18Z2019-08-20T14:18:18ZOrgan transplants: why so many people are put off donating<figure><img src="https://images.theconversation.com/files/288737/original/file-20190820-170918-14wwv6w.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">
</span> <span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/concept-education-group-medical-students-lab-1075250543?src=6--sYtqr-ZTk2G1owNMqzw-1-10">irinabdw/Shutterstock</a></span></figcaption></figure><p>It’s well known that there’s a worldwide shortage of organ donors. More than <a href="https://www.who.int/transplantation/gkt/statistics/en/">100,000 organ transplants</a> have taken place around the world every year since 2008 but this is way below <a href="https://www.ncbi.nlm.nih.gov/pubmed/18261540">what’s needed</a>. </p>
<p><a href="https://nhsbtdbe.blob.core.windows.net/umbraco-assets-corp/16537/organ-donation-and-transplantation-activity-report-2018-2019.pdf">In the UK</a>, for example, figures show 6,077 people were on the waiting list for an organ transplant in March 2019. And that 408 people died in the previous 12 months while waiting for a donor.</p>
<p>The number of people signing up to be an organ donor in the UK has gone up for nine years in a row – <a href="https://www.organdonation.nhs.uk/get-involved/news/more-than-50-000-people-now-alive-thanks-to-organ-donation-and-transplant/">reaching 25.3m</a>. During 2017-2018, 1,575 people in the UK became organ donors after they died. This was 162 more donors than the previous year, making it the highest year-on-year increase in 28 years. But this is still below rates in other countries. Spain for example, which has the <a href="https://mosaicscience.com/story/spain-uk-organ-donation-transplants-liver-kidney-heart-lungs-surgery-nhs/">highest organ donation rate</a> of any country in the world, operates an opt-out system which means that a far greater percentage of its population are eligible to donate their organs. </p>
<p>A standard way of measuring the rate of donation in a country is <a href="https://www.wideacademy.co/2018/06/spain-is-the-world-leader-for-organ-donation-what-can-other-countries-learn/">per million people</a>. Spain has a population of 46.72 million and <a href="http://www.ont.es/prensa/NotasDePrensa/11%20Enero%20NP%20Balance%202017.pdf">figures published for 2017</a> reveal that 2,183 people in Spain became organ donors last year after they died. That’s 46.9 donors for every million people living in Spain.</p>
<h2>Tackling the organ shortage</h2>
<p>According to NHS Blood and Transplant, 43% of families of potential deceased donors in the UK <a href="https://nhsbtdbe.blob.core.windows.net/umbraco-assets-corp/1395/nhsbt_organ_donor_strategy.pdf">refuse to allow donation</a> – and sometimes even overturn the recorded wishes of their loved ones. </p>
<p>But it’s hoped this could be about to change, as from spring 2020, organ donation in England will move to an opt-out system. <a href="https://www.organdonation.nhs.uk/helping-you-to-decide/real-life-stories/people-who-have-benefitted-from-receiving-a-transplant/max-heart-transplant-recipient-and-campaigner/">“Presumed consent”</a>, or opt-out donation systems – like in Spain – are seen as <a href="https://www.statnews.com/2017/07/06/opt-solution-organ-shortage/">instrumental in increasing the availability of organs</a> around the world. They consider all adults (with some exemptions) to be an organ donor when they die. After <a href="https://www.organdonation.nhs.uk/get-involved/news/response-to-wales-achieving-highest-organ-donation-consent-rates-across-the-uk/">Wales adopted the opt-out system</a> in December 2015, family consent rates increased from 58% to 77%.</p>
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<p>But while presumed consent is an important step towards increasing the pool of available organs, it is not a cure all. Indeed, recent small growth in the numbers of <a href="https://nhsbtdbe.blob.core.windows.net/umbraco-assets-corp/1395/nhsbt_organ_donor_strategy.pdf">posthumous donation</a> has not resulted in more transplants. According to <a href="https://nhsbtdbe.blob.core.windows.net/umbraco-assets-corp/1395/nhsbt_organ_donor_strategy.pdf">NHS Blood and Transplant</a> this is because, “donors are older, more obese, and less likely to have suffered a trauma-related death, all of which have adverse effects on transplant outcomes”.</p>
<h2>Transplant athletes</h2>
<p>This is where the <a href="http://worldtransplantgames.org/games/">World Transplant Games</a>, which takes place every two years, can make a difference, as it gives people who have received an organ transplant the opportunity to compete and showcase their health, but also raises awareness of the power of donation.</p>
<p>The sight of “transplant athletes” shooting arrows at an archery range or taking part in a 30km cycling race is one of the strongest testimonies that can be made to highlight the difference one can make by registering to become a posthumous organ donor.</p>
<p>The 1,500 athletes from 59 countries who will join the games in the North East of England this year will be celebrating their physically active lives, as <a href="https://www.itv.com/news/tyne-tees/2019-08-12/team-gb-s-oldest-competitor-in-the-world-transplant-games-says-taking-part-is-a-privilege/">83-year old Mike Gibbons</a> will most likely demonstrate 12 years after his kidney transplant. But from the point of view of <a href="http://worldtransplantgames.org/partners/">the organisers</a> the competitions at 13 sports venues are key to raising “public awareness of the importance and benefits of organ donation”. </p>
<h2>Lasting impact</h2>
<p>The games guarantee positive media coverage of a subject that tends to receive little attention. Indeed, the few studies on the prominence of organ donation in the news have found <a href="https://www.tandfonline.com/doi/abs/10.1080/10410230802676516">it receives a low amount of attention</a> by mainstream television.</p>
<p>Thomas Feeley a professor in the department of communication at the University of Buffalo in the US, suggests that insufficient coverage of organ donation and the tendency people have to filter news content based on political and other preferences <a href="https://www.tandfonline.com/doi/abs/10.1080/10410236.2014.973549?journalCode=hhth20">may contribute to knowledge gaps on the subject</a>. </p>
<figure class="align-center ">
<img alt="" src="https://images.theconversation.com/files/288516/original/file-20190819-123710-u7g4s9.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/288516/original/file-20190819-123710-u7g4s9.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/288516/original/file-20190819-123710-u7g4s9.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/288516/original/file-20190819-123710-u7g4s9.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/288516/original/file-20190819-123710-u7g4s9.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/288516/original/file-20190819-123710-u7g4s9.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/288516/original/file-20190819-123710-u7g4s9.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=503&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
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<span class="caption">Meet the athletes changing the face of organ donation.</span>
<span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/cycling-competitioncyclist-athletes-riding-race-high-529827067?src=gXnVYgsszI6SgId81JWSIw-1-70">Shutterstock/Pavel1964</a></span>
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<p>It may also account for many people’s <a href="https://www.tandfonline.com/doi/full/10.1080/07359680802126079?src=recsys">misinformed attitudes toward donation</a> and <a href="https://onlinelibrary.wiley.com/doi/full/10.1111/bjhp.12344">distrust in the organ donation process</a>. This alongside beliefs such as the so called “<a href="https://journals.sagepub.com/doi/abs/10.1177/1359105308090936?journalCode=hpqa">jinx factor</a>” – whereby people believe if they sign up to donate they may be “temping fate” – along with the “<a href="https://psycnet.apa.org/record/2011-04969-014">ick</a>” factor can be enough to put people off donating.</p>
<p>As it stands right now, increasing the pool of posthumous donors is the single most realistic way to tackle the organ shortage. Though this may well change in the future as <a href="https://nhsbtdbe.blob.core.windows.net/umbraco-assets-corp/5856/rintag-research-proposal-further-evaluation-of-ex-vivo-lung-perfusion.pdf">evidence suggests</a> the pool of suitable organs could be significantly extended with adequate research and investment in technologies <a href="http://www.newcastle-hospitals.org.uk/news/news-item-22636.aspx">to repair and transport organs</a> from donors when organ function is not optimal, </p>
<p>Following the 2013 World Transplant Games in Durban, South Africa, organ donors registering online <a href="https://wtgf.org/">increased by 30%</a>. Now it’s hoped a similar effect will be experienced in the UK.</p><img src="https://counter.theconversation.com/content/121843/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>The authors do not work for, consult, own shares in or receive funding from any company or organisation that would benefit from this article, and have disclosed no relevant affiliations beyond their academic appointment.</span></em></p>The number of people choosing to become posthumous donors in the UK has reached 25.3m but this is still considerably lower than other countries.Gabriel Moreno Esparza, Senior Lecturer in Journalism, Northumbria University, NewcastleStephen Clark, Professor of Cardiothoracic Surgery and Cardiopulmonary Transplantation, Northumbria University, NewcastleLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1212282019-08-02T10:27:27Z2019-08-02T10:27:27ZHuman-animal hybrids are coming and could be used to grow organs for transplant – a philosopher weighs in<figure><img src="https://images.theconversation.com/files/286640/original/file-20190801-169688-1mprhc2.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Pigs growing human pancreases, coming to a farm near you soon?</span> <span class="attribution"><span class="source">shutterstock</span></span></figcaption></figure><p>Around the world thousands of people are on organ donor waiting lists. While some of those people will receive the <a href="http://www.transplant-observatory.org/">organ transplants</a> they need in time, the sad reality is that many will die waiting. But controversial new research may provide a way to address this crisis.</p>
<p>Japan has recently overturned its ban on the creation of human-animal hybrids, or “chimeras”, and <a href="https://www.nature.com/articles/d41586-019-02275-3">approved a request by researchers from the University of Tokyo</a> to create a <a href="https://theconversation.com/whats-the-benefit-in-making-human-animal-hybrids-72179">human-mouse hybrid</a>.</p>
<p>Scientists will attempt to grow a human pancreas inside a mouse, using a certain kind of stem cell known as “induced pluripotent stem cells”. These are cells that can grow into almost any kind of cell. The stem cells will be injected into a mouse embryo, which has been genetically modified to be incapable of producing a pancreas using its own cells. This hybrid embryo is then implanted in a mouse surrogate and allowed to grow. The goal is to eventually grow a human pancreas in a larger animal – such as a pig – which can be transplanted into a human.</p>
<p><a href="https://theconversation.com/human-pig-chimeras-may-provide-vital-transplant-organs-but-they-raise-ethical-dilemmas-60648">Human-animal hybrids</a> have been created in both the US and UK, but <a href="https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/491496/Animals_Containing_Human_Material_Final_Guidance.pdf">regulations</a> require the embryo to be destroyed usually by 14 days. The new Japanese regulations allow for the embryo to be implanted in a surrogate uterus, and eventually, to be born as a mouse with a “human” pancreas. The mice will then be monitored for up to two years, to see where the human cells travel and how the mice develop.</p>
<h2>Ethical issues</h2>
<p>The idea of <a href="https://theconversation.com/how-long-before-we-can-transplant-an-animals-heart-in-a-human-57701">human-animal hybrids</a> can raise a lot of questions and it’s easy to feel they are “unnatural” because they violate the boundaries between species. But the boundary between species is often fluid, and we don’t seem to have the same reaction to animal hybrids like mules, or the many kinds of plant hybrids humans have produced.</p>
<p><a href="https://www.tandfonline.com/doi/abs/10.1162/15265160360706417">Philosophers</a> believe that negative reactions to human-animal hybrids might be based on our need to have a <a href="https://theconversation.com/wary-of-human-animal-hybrids-its-probably-just-your-own-moral-superiority-72720">clear boundary</a> between things that are “human” and things that are not. This distinction grounds many of our social practices involving animals, and so threatening this boundary could create moral confusion. </p>
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<em>
<strong>
Read more:
<a href="https://theconversation.com/how-much-should-you-be-told-about-your-organ-donor-35118">How much should you be told about your organ donor?</a>
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</p>
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<p>Some might feel that human-animal hybrids are a threat to human dignity. But it’s difficult to specify what this claim really amounts to. A stronger objection is the idea that a human-animal hybrid may acquire human characteristics, and as a result, be entitled to human level moral consideration. </p>
<p>If, for example, the injected human stem cells travel to the mouse’s brain, it could develop enhanced cognitive capacities compared to a normal mouse. And on that basis, it may be entitled to a <a href="https://fewd.univie.ac.at/fileadmin/user_upload/inst_ethik_wiss_dialog/Singer__P._2009._Speciesism_and_Moral_Status_44245648.pdf">much higher moral status</a> than a mouse would normally be granted – and possibly make it unethical for use in scientific experimentation.</p>
<h2>Moral status</h2>
<p>Moral status tells us whose interests count, from a moral point of view. Most people would say human beings have full moral status, as do babies, fetuses and the severely disabled, which means we must consider their interests. More controversially, some people also believe that non-human animals – such as <a href="https://www.nonhumanrights.org/blog/cecilia-chimpanzee-legal-person/">chimpanzees</a> or <a href="https://harvardmagazine.com/2007/05/the-moral-status-of-the.html">human embryos</a> – possess a degree of moral status approaching that of human beings. </p>
<p>But pinning down what characteristics confer moral status can be tricky. <a href="https://plato.stanford.edu/entries/grounds-moral-status/#SpecRela">Various criteria have been suggested</a>, including the ability to reason, have self-awareness, the ability to form relationships with others, the capacity for suffering, or simply being a part of the human species. But each of these criteria ends up including some groups who don’t have moral status, or excluding some who do.</p>
<figure class="align-center ">
<img alt="" src="https://images.theconversation.com/files/286644/original/file-20190801-169692-1er7dbo.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/286644/original/file-20190801-169692-1er7dbo.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=391&fit=crop&dpr=1 600w, https://images.theconversation.com/files/286644/original/file-20190801-169692-1er7dbo.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=391&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/286644/original/file-20190801-169692-1er7dbo.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=391&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/286644/original/file-20190801-169692-1er7dbo.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=491&fit=crop&dpr=1 754w, https://images.theconversation.com/files/286644/original/file-20190801-169692-1er7dbo.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=491&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/286644/original/file-20190801-169692-1er7dbo.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=491&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">A human-animal chimera contains a mixture of human cells and animals cells.</span>
<span class="attribution"><span class="source">Pexels</span></span>
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</figure>
<p>The idea that non-human animals might have sufficient moral status for it to be morally wrong to kill them for food, or use for medical research, has gained significant traction in the philosophical community. Similarly, veganism has grown massively worldwide. There’s been a <a href="https://www.reportbuyer.com/product/4959853/top-trends-in-prepared-foods-2017-exploring-trends-in-meat-fish-and-seafood-pasta-noodles-and-rice-prepared-meals-savory-deli-food-soup-and-meat-substitutes.html">600% increase in people identifying as vegan</a> in the US in just the last three years. While in the UK the number of vegans has risen from <a href="https://www.vegansociety.com/news/media/statistics">150,000 in 2014 to 600,000 in 2018</a>, which suggests people are increasingly willing to take the <a href="https://theconversation.com/vegan-diet-how-your-body-changes-from-day-one-100413">interests of animals</a> seriously.</p>
<p>From a philosophical perspective using non-human animals for food or medical research is unethical because it significantly harms the animal, while providing only a small or insignificant benefit to us. But even those who believe that non-human animals have moral status would likely support sacrificing the life of a non-human animal to save the life of a human – as would be the case in human-animal organ donation. This is because a human can value its life in complex ways that a non-human animal cannot. </p>
<p>But if human-animal hybrids become more like us than non-human animals, it could then be argued that it’s unethical to produce a hybrid simply for the purposes of extracting its organs. That is, harvesting the organs of a non-consenting human-animal hybrid could be morally equivalent to <a href="https://theconversation.com/organ-trafficking-a-protected-crime-16178">harvesting the organs</a> of a non-consenting human. </p>
<p>Of course, for this argument to work, there would need to be strong reasons for thinking not only that a human-animal hybrid has moral status, but that its life has equal moral value to that of a human. And even if a mouse-human hybrid did have a “human-like” brain, it is exceedingly unlikely that it would be human enough to merit equal moral consideration. </p>
<p>So given that this process has the potential to successfully resolve the perpetual lack of organs for transplant, it’s reasonable to think that the use of human-animal hybrids is the right thing to do to <a href="https://theconversation.com/pig-implants-could-deliver-insulin-to-people-with-diabetes-19178">help save human lives</a> – even if it does require some level of animal suffering.</p><img src="https://counter.theconversation.com/content/121228/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Mackenzie Graham does not work for, consult, own shares in or receive funding from any company or organisation that would benefit from this article, and has disclosed no relevant affiliations beyond their academic appointment.</span></em></p>The idea of human-animal hybrids can raise a lot of questions and it’s easy to feel they are “unnatural” because they violate the boundaries between species.Mackenzie Graham, Research Fellow of Philosophy, University of OxfordLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1160442019-07-23T13:02:19Z2019-07-23T13:02:19ZHeart transplant doctors could help more people by accepting donations from the obese<figure><img src="https://images.theconversation.com/files/276483/original/file-20190526-187176-gku2lr.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">The number of potential organ donors who are obese is on the rise.</span> <span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/female-doctor-holding-red-heart-shape-291044921?src=ePsutfxdsAXDN6VNtdUmMQ-1-14">Csaba Deli/shutterstock.com</a></span></figcaption></figure><p><a href="https://www.cdc.gov/heartdisease/facts.htm">Heart disease</a> is the top cause of death in the U.S. For some people with end-stage heart disease, a heart transplant can save their life. </p>
<p>Unfortunately, there are currently more patients on the <a href="https://unos.org/data/">heart transplant list</a> than there are suitable donors. As a result, half of the patients on the heart transplant list wait for over a year. Some will die without ever getting a heart.</p>
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<p>As doctors who work with patients who desperately need heart transplants, we want to be sure that we are using all of the organs that we can.</p>
<p>One thing that is important in heart transplantation is finding the right size organ for the recipient. A heart that is too small may not support the patient. A heart that is too big may not fit in the patient’s chest. <a href="https://well.blogs.nytimes.com/2012/08/06/transplant-centers-struggle-with-donors-obesity/">Weight has been used by many transplant centers</a> as a way to ensure a good size match between the donor and recipient.</p>
<p>Today, 40% of Americans can be <a href="https://www.nbcnews.com/health/health-news/america-s-obesity-epidemic-reaches-record-high-new-report-says-n810231">classified as obese</a>. Almost 8% fall into the category of severe obesity, which is <a href="https://www.cdc.gov/obesity/adult/defining.html">a body mass index</a> greater than 40. These numbers have increased significantly since 2003 and are still going up.</p>
<p>Many heart transplant centers require that heart transplant recipients keep their BMI at 35 or less. As the donor pool becomes increasingly overweight, our concern is that severely obese donors may get overlooked, because of the mismatch between the donor and recipient weights.</p>
<h2>Oversized hearts</h2>
<p><a href="https://doi.org/10.1016/j.healun.2019.01.379">In our donor heart study</a>, published as an abstract in April, we looked at two questions. </p>
<p>First, what percentage of donor hearts come from super obese donors, with a BMI over 40? Second, what are the outcomes for patients who receive a heart from a donor who is super obese?</p>
<p>To answer our questions, we used the United Network for Organ Sharing database. We looked at all the heart transplants that were done in the U.S. between 2003 and 2017.</p>
<p>Of over 26,000 heart transplants, 3.5% were from donors who had a BMI over 40. Mirroring societal trends, the prevalence of super obese donors increased over time, from 2.2% in 2003 to 5.3% in 2017.</p>
<p>Obese donors were older and were more likely to have other medical problems, including diabetes and hypertension. In two-thirds of the transplants, the donors were considered oversized, at 130% the weight or more of the recipient.</p>
<p>Ordinarily, heart transplant doctors might think that more preexisting medical problems and older donor hearts, as seen in the super obese donor group, would result in more complications for the recipient. </p>
<p>However, in looking at over 10 years of data using these organs, our data suggests that this is not the case. Complications – such as postoperative dialysis, acute rejection or postoperative stroke – were the same for patients who had a super obese heart transplant donor as they were for patients who did not have a super obese heart donor.</p>
<p>People who received hearts from super obese donors also had similar long-term outcomes, including survival, as recipients of hearts from non-super obese donors.</p>
<h2>Accepting suitable hearts</h2>
<p><a href="https://uvahealth.com/findadoctor/profile/leora-t-yarboro">As doctors</a> <a href="https://surgery.virginia.edu/education/general-surgery-residency-program/current-surgery-residents/">who work</a> with patients that need transplants, we feel that it is important to improve awareness about how to become an organ donor.</p>
<p>It is also important to look critically at the organs that are being donated and make sure that they are being used to their fullest potential. Every year, patients die while waiting for a heart transplant.</p>
<p>This study shows that, for donors with a BMI over 40, it’s safe to use carefully selected hearts – screened for other important criteria examined in all donor hearts, like a history of coronary disease.</p>
<p>This data can potentially serve to expand the number of suitable donors for those patients in need.</p>
<p>[ <em>Deep knowledge, daily.</em> <a href="https://theconversation.com/us/newsletters?utm_source=TCUS&utm_medium=inline-link&utm_campaign=newsletter-text&utm_content=deepknowledge">Sign up for The Conversation’s newsletter</a>. ]</p><img src="https://counter.theconversation.com/content/116044/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>The authors do not work for, consult, own shares in or receive funding from any company or organization that would benefit from this article, and have disclosed no relevant affiliations beyond their academic appointment.</span></em></p>As the rate of obesity in the US rises, transplant centers are debating whether to accept organ donations from the obese. A new study suggests that oversized hearts are safe to use.Leora Yarboro, Associate Professor of Thoracic and Cardiovascular Surgery, University of Virginia Medical Center, University of VirginiaElizabeth D. Krebs, Resident Physician in General Surgery, University of Virginia Medical Center, University of VirginiaLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1164112019-07-12T19:44:45Z2019-07-12T19:44:45ZTrump’s order for more action on kidney disease may shrink organ transplant waitlists<p>Every year, thousands of Americans with kidney failure who could benefit from life-saving transplants <a href="https://doi.org/10.1111/ajt.15274">can’t get the organs they need</a>. </p>
<p>A record number of people are dying while waiting for an organ to become available that might have saved their lives. An <a href="https://www.hhs.gov/about/news/2019/07/10/hhs-launches-president-trump-advancing-american-kidney-health-initiative.html">executive order</a> President Donald Trump signed on July 10, 2019 could help some of them.</p>
<p>It calls for taking steps to <a href="https://www.vox.com/future-perfect/2019/7/10/20687507/triump-kidney-disease-transplant">increase the number of kidney donors</a>, improve care for <a href="https://www.kidney.org/atoz/content/kidney-transplant">people with kidney disease</a>, encourage the development of <a href="https://www.nibib.nih.gov/news-events/newsroom/artificial-kidney-development-advances-thanks-collaboration-nibib-quantum">artificial kidneys</a> and more. The intent is to drastically and quickly reduce the number of patients with end-stage kidney disease.</p>
<p>Among other things, the executive order outlines plans to compensate living donors for many of their expenses, make the bureaucracy controlling deceased organ donations more efficient and encourage <a href="https://www.healthcaredive.com/news/trump-executive-order-seeks-to-overhaul-us-kidney-care/558455/">more preventive care</a>.</p>
<p>As a <a href="https://www.researchgate.net/scientific-contributions/38447668_Amit_D_Tevar">transplant surgeon</a>, I believe that the new policy could increase incentives Americans have to become organ donors. Coupled with more public awareness about the need, doctors like me could be saving hundreds of thousands more people.</p>
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<a href="https://images.theconversation.com/files/283740/original/file-20190711-173360-14cxqoa.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="" src="https://images.theconversation.com/files/283740/original/file-20190711-173360-14cxqoa.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/283740/original/file-20190711-173360-14cxqoa.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/283740/original/file-20190711-173360-14cxqoa.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/283740/original/file-20190711-173360-14cxqoa.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/283740/original/file-20190711-173360-14cxqoa.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/283740/original/file-20190711-173360-14cxqoa.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/283740/original/file-20190711-173360-14cxqoa.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=503&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
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<span class="caption">Nearly half a million Americans are on dialysis.</span>
<span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/hemodialysis-machines-tubingtransplantationmedical-equipment-concept-1152229250?src=Mt7E59K3ty6nOgMhIFvJ9A-2-39&studio=1">KANOWA/shutterstock.com</a></span>
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</figure>
<h2>Supply and demand</h2>
<p>About <a href="https://www.kidney.org/news/newsroom/factsheets/KidneyDiseaseBasics">37 million Americans</a>, more than 10% of the entire population, have some form of kidney disease. The most common causes of this disease are <a href="https://www.niddk.nih.gov/health-information/kidney-disease/chronic-kidney-disease-ckd/causes">high blood pressure and diabetes</a>. Nearly 500,000 of these patients <a href="https://www.niddk.nih.gov/health-information/health-statistics/kidney-disease">require dialysis</a>, using a machine to carry out the function of the kidneys by filtering toxins out of their blood. Approximately <a href="https://www.cdc.gov/kidneydisease/basics.html">340 people start using dialysis every day</a> – a big inconvenience because it’s usually done three times a week, for three to four hours at a time.</p>
<p>Only half of those people beginning dialysis today will <a href="https://www.srtr.org/media/1331/a-calculator-for-kidney-transplant-waitlist-outcomes.pdf">survive for more than five years</a>. Transplants lead to better long-term survival rates: About 86% of the patients who get a donated kidney live for at least <a href="https://doi.org/10.1053/j.ackd.2016.07.001">five more years</a>, but each year only about 20% of the Americans <a href="https://optn.transplant.hrsa.gov/data/view-data-reports/national-data/#">waiting for kidney transplants</a> will get one.</p>
<p>Having a transplant from a living donor remains the best option for many patients, as the wait time for a deceased donor organ can be long. But the number of living donor transplants is rising very slowly. </p>
<p>Based on my experience, I believe that a lack of physician and patient awareness of the benefits for the recipient and the minimal risks for the donor may be one reason why kidneys are in short supply. Another issue is the <a href="https://www.doi.org/10.1111/ajt.14949">financial burden</a> on donors, who must undergo surgery. They don’t pay for operating costs – that is currently covered by recipient’s insurance – but having the procedure leads to lost wages, and spending on child care, travel and even pet care. That is one problem Trump’s order is designed to alleviate.</p>
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<h2>Record numbers</h2>
<p>Another problem is that there just aren’t enough kidneys to go around. Kidneys for transplantation are distributed based on the number of years a patient has been on dialysis or how long they have been waiting. </p>
<p>Even though a record 21,167 kidney transplants were performed in 2018, <a href="https://www.doi.org/10.1111/ajt.14124">most kidney-disease patients currently waiting for an organ</a> won’t ultimately get one because the average wait times exceed their life expectancy.</p>
<p>The <a href="https://optn.transplant.hrsa.gov/">federal government</a> oversees the distribution of donated kidneys through <a href="https://unos.org/about/">United Network of Organ Sharing</a>, an independently run nonprofit, and spends <a href="https://www.healthcaredive.com/news/trump-executive-order-seeks-to-overhaul-us-kidney-care/558455/">US$114 billion a year</a> on patients with kidney disease through Medicare.</p>
<p>In 2018, transplants from a total of <a href="https://scrubsmag.com/long-time-nurse-donates-multiple-organs-after-suffering-fatal-medical-incident/">10,722 deceased organ donors</a> resulted in just <a href="https://optn.transplant.hrsa.gov/data/view-data-reports/national-data/">14,725 kidney transplants and 7,849 liver transplants</a>. Many procured organs are discarded because they are not suitable for transplants. </p>
<p>The need for lifesaving organs for transplant far exceeds the demand and the gap has been growing for years.</p>
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<h2>Liver disease</h2>
<p>If the number of organ donors rises as a result of new federal policies, it will also benefit people who need other organs.</p>
<p>For example, roughly <a href="https://www.cdc.gov/nchs/fastats/liver-disease.htm">4.5 million Americans have liver disease</a>. This is primarily due to cirrhosis, a condition in which your liver is scarred and permanently damaged – typically from developing long-term <a href="https://www.fda.gov/patients/get-illnesscondition-information/hepatitis-b-c">hepatitis B or C</a>, <a href="https://www.mayoclinic.org/diseases-conditions/alcohol-use-disorder/symptoms-causes/syc-20369243">alcoholic liver disease</a> or <a href="https://www.mayoclinic.org/diseases-conditions/nonalcoholic-fatty-liver-disease/symptoms-causes/syc-20354567">non-alcoholic fatty liver disease</a>. </p>
<p>Early detection, treatment and referrals for a transplant has improved the outcomes for people who do get transplants – either an entire liver from someone who has died or a partial liver transplant from a living donor. Currently 90% of the people who get liver transplants survive for at least one more year and <a href="https://srtr.transplant.hrsa.gov/annual_reports/2017/Liver.aspx">75% live at least another five years</a>. Yet the death rate for patients with liver disease and cirrhosis who do not get transplants has <a href="http://dx.doi.org/10.15585/mmwr.mm6638a9">increased 31% in the past decade</a>.</p>
<p>As more patients and their doctors are understanding the benefits of organ transplantation, greater numbers of patients are being evaluated and placed on waitlists. Today there are more than <a href="https://optn.transplant.hrsa.gov/data/">121,000 patients waiting for a transplant</a>. Roughly 103,000 need a kidney transplant and more than 13,400 require a liver transplant. Most of the rest require a heart, lung or pancreas.</p>
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<p class="fine-print"><em><span>Amit Tevar receives funding from
National Institutes of Health
National Kidney Foundation - Medical Advisory Board
</span></em></p>The need for organs to transplant far exceeds the supply.Amit Tevar, Associate Professor of Surgery; Director, Kidney and Pancreas Transplant Program, Starzl Transplant Institute, University of PittsburghLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1183312019-06-12T23:10:36Z2019-06-12T23:10:36ZCanada must end complicity in China’s brutal organ trafficking regime<figure><img src="https://images.theconversation.com/files/279242/original/file-20190612-32335-tlmxl0.jpg?ixlib=rb-1.1.0&rect=34%2C129%2C5647%2C3535&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">It is currently legal for Canadians to travel abroad and obtain organs from illicit sources. If it gains final approval from the Senate, Bill S-240 will change this.</span> <span class="attribution"><span class="source">(Shutterstock)</span></span></figcaption></figure><p>The clock is ticking on Canada’s chance to enact important measures against organ trafficking. </p>
<p>For the past two decades, <a href="https://endtransplantabuse.org/an-update/">the Chinese regime has been killing prisoners of conscience for their organs</a>. The purchase and sale of human lives has become an industry, and Canada, among other developed countries, has been supporting it. </p>
<p><a href="https://www.parl.ca/LegisInfo/BillDetails.aspx?Language=E&billId=9206308">Bill S-240</a> seeks to put a stop to Canadian complicity by criminalizing organ tourism. The bill has <a href="https://openparliament.ca/bills/42-1/S-240/">received unanimous consent from both the Senate and the House of Commons</a>, and is awaiting final Senate approval before the end of the parliamentary session before it can be passed.</p>
<p>This is a critical moment of decision for Canada.</p>
<p>As a member of the Canadian Committee of the <a href="https://endtransplantabuse.org/">International Coalition To End Transplant Abuse In China</a>, I have been among those advocating for Bill S-240, an act that brings important changes to the Criminal Code and the Immigration and Refugee Protection Act in order to combat organ tourism.</p>
<h2>Live organs on demand</h2>
<p>Organ trafficking is a global phenomenon. However, forced organ harvesting deserves special attention in the context of the Chinese. In China, this practice is <a href="https://www.uitgeverijparis.nl/scripts/read_article_pdf.php?id=1001349943">driven by the state</a>. </p>
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<p>It’s directed at <a href="http://dx.doi.org/10.1136/medethics-2016-103533">prisoners of conscience</a> to advance <a href="https://doi.org/10.5038/1911-9933.12.1.1513">policies of genocide</a>. Forced organ harvesting in China is carried out at such scale that it <a href="https://endtransplantabuse.org/an-update-chapter-nine-findings-from-164-hospitals-volume-drivers/#party-government-industry">constitutes an industry</a>.</p>
<p>Since the early 2000s, <a href="https://endtransplantabuse.org/an-update-chapter-seven-volume-indicators/">Chinese hospitals have been providing live organs on demand</a>. Perfectly matched organs can be obtained <a href="https://endtransplantabuse.org/an-update-chapter-seven-volume-indicators/#endless-supply">in weeks or even days</a>.</p>
<p>With an estimation of <a href="https://endtransplantabuse.org/an-update-chapter-ten-exploring-total-volume-of-kidney-and-liver-transplants/">60,000 to 100,000 major organ transplant cases per year in China</a>, the availability of organs cannot be accounted for by the number of death-row executions and voluntary organ donations.</p>
<h2>Falun Gong, Uyghurs, Tibetans targeted</h2>
<p>The sudden boom in organ transplantation in China coincides with the start of the <a href="https://www.goodreads.com/en/book/show/7505721-bloody-harvest">eradication campaign against Falun Gong</a>. Since July 1999, Falun Gong practitioners have been incarcerated and tortured in massive numbers. During captivity, Falun Gong adherents have been <a href="http://archives-republicans-foreignaffairs.house.gov/112/75859.pdf">singled out for organ examinations and blood tests</a>. </p>
<p>As well as the Falun Gong, Uyghurs, Tibetans and some Christian sects are also being targeted. Forced organ harvesting is <a href="https://www.chinaorganharvest.org/">continuing despite China’s announcement that it’s going to stop the illicit practice</a>.</p>
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<p><a href="https://www.hrw.org/news/2017/12/13/china-minority-region-collects-dna-millions">Human Rights Watch reported</a> in December 2017 that the Chinese government forcibly collected biodata, including DNA and blood samples, from 19 million Uyghurs that year under the guise of a free public health program in which all citizens are given physical examinations. </p>
<p>At the same time, the Chinese regime began mass arrest and incarceration of Uyghurs, with <a href="https://www.reuters.com/article/us-china-rights-un/u-n-says-it-has-credible-reports-that-china-holds-million-uighurs-in-secret-camps-idUSKBN1KV1SU">a million Uyghurs</a> imprisoned in concentration camps. Meanwhile, a priority lane labelled as <a href="https://www.rfa.org/cantonese/news/organ-10062017075527.html">“special passengers/human organs transport lane”</a> appeared in the Kashgar airport of Xinjiang Uyghur.</p>
<h2>Canadians travel to China for illicit organs</h2>
<p>For the past two decades, Canada, among other developed countries, has been a participant in this abuse. Dr. Jeff Zaltzman, the head of renal transplants at St. Michael’s Hospital in Toronto, revealed in 2014 that <a href="http://www.theepochtimes.com/n3/1050800-organ-harvesting-in-china-puts-canadian-doctors-in-tough-spot/">he alone had at least 50 patients who had gone to China for transplants</a>. Zaltzman has since advocated for changing legislation to address the issue of forced organ harvesting.</p>
<p><a href="https://www.who.int/bulletin/volumes/85/12/06-039370/en/">Canada has, in fact, been identified as one of the seven major organ-importing countries</a>, alongside the United States, Australia, Israel, Japan, Oman and Saudi Arabia.</p>
<p>Barring a few exceptions, the Canadian Criminal Code only criminalizes acts committed in Canada. As such, it is currently legal for Canadians to travel abroad and obtain organs from illicit sources, because such acts do not take place on Canadian soil.</p>
<h2>An extraterritorial offence</h2>
<p>Bill S-240 recognizes the extraterritorial nature of organ transplant abuse. By making the purchase of organs, and obtaining organs without donors’ informed consent an extraterritorial offence, the bill creates important measures to stem the flow of organ tourism to countries such as China.</p>
<figure class="align-center ">
<img alt="" src="https://images.theconversation.com/files/279227/original/file-20190612-32335-1cuxr3m.jpeg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/279227/original/file-20190612-32335-1cuxr3m.jpeg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=445&fit=crop&dpr=1 600w, https://images.theconversation.com/files/279227/original/file-20190612-32335-1cuxr3m.jpeg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=445&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/279227/original/file-20190612-32335-1cuxr3m.jpeg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=445&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/279227/original/file-20190612-32335-1cuxr3m.jpeg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=559&fit=crop&dpr=1 754w, https://images.theconversation.com/files/279227/original/file-20190612-32335-1cuxr3m.jpeg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=559&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/279227/original/file-20190612-32335-1cuxr3m.jpeg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=559&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
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<span class="caption">Former Canadian Secretary of State for Asia-Pacific David Kilgour presents a revised report about organ harvesting from Falun Gong practitioners in China.</span>
<span class="attribution"><span class="source">(Epoch Times)</span></span>
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<p>The proposed legislation would also bring Canada into further conformity with emerging international legal norms, such as the principle against transplant commercialism enshrined in <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2813140/">The Declaration of Istanbul on Organ Trafficking and Transplant Tourism</a>. </p>
<p>Countries like <a href="https://endtransplantabuse.org/legislation/">Israel, Spain, Taiwan, Italy and Norway</a> have already enacted similar legislation. <a href="http://www.europarl.europa.eu/sides/getDoc.do?type=MOTION&reference=P7-RC-2013-0562&language=EN">The European Union</a> and <a href="http://tiny.cc/HRes343">United States</a> have issued a declaration and resolution respectively condemning the crime of forced organ harvesting.</p>
<p>On Dec. 11, 2018, the <a href="https://chinatribunal.com/">China Tribunal</a> — an independent people’s tribunal chaired by Sir Geoffrey Nice, former deputy prosecutor who led the prosecution of Slobodan Milosevic at the International Criminal Tribunal for the former Yugoslavia — stated the following in its interim judgment: </p>
<blockquote>
<p>“The Tribunal’s members are all certain — unanimously, and sure beyond reasonable doubt — that in China forced organ harvesting from prisoners of conscience has been practised for a substantial period of time involving a very substantial number of victims.” </p>
</blockquote>
<p>The final judgement is due to be released on June 17.</p>
<p>It’s vital that Canada ensures Bill S-240 is passed.</p>
<h2>China plans globalization of mass murder</h2>
<p>China has <a href="http://archive.is/DvA8s">further ambitions to develop organ transplantation into an export industry</a> as part of China’s “Belt and Road” initiative.</p>
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<iframe width="440" height="260" src="https://www.youtube.com/embed/Od3Q6O7HMy8?wmode=transparent&start=0" frameborder="0" allowfullscreen=""></iframe>
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<p>The industrialization and globalization of organ transplantation is the industrialization and globalization of mass murder. If this practice is allowed to take root in human societies, ever more vulnerable populations would be sacrificed in the pursuit of a healthy life by the powerful and the rich.</p>
<p>The cost of inaction means a continuation of Canadian complicity in one of the worst crimes of our times. It is vital that Canada passes this legislation before the end of this parliamentary session, bringing this complicity to an end.</p><img src="https://counter.theconversation.com/content/118331/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Maria Cheung is Professor at the Faculty of Social Work, University of Manitoba. She is also Research Affiliate, Centre for Human Rights Research at the University of Manitoba. She has received funding from the Canadian International Development Agency, (Tier 1 UPCD), International Association of Schools of Social Work, and University of Manitoba to conduct research on human rights issues and social work education. She is currently chair of the Canadian Committee, the International Coalition to End Transplant Abuse in China.</span></em></p>When a Canadian travels to China to receive an organ transplant, a member of a persecuted minority may be killed to provide the organ.Maria Cheung, Professor of Social Work, University of ManitobaLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1176852019-05-29T12:35:35Z2019-05-29T12:35:35ZOpt-out organ donation: presume kindness, not consent, to save more lives<figure><img src="https://images.theconversation.com/files/276977/original/file-20190529-192339-1r7hdvt.jpg?ixlib=rb-1.1.0&rect=0%2C0%2C5574%2C3496&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">A gift worth giving.</span> <span class="attribution"><a class="source" href="https://www.shutterstock.com/image-illustration/closed-human-organ-refrigerator-box-red-622980821?src=6--sYtqr-ZTk2G1owNMqzw-1-20">NosorogUA/Shutterstock</a></span></figcaption></figure><p>Around <a href="https://www.organdonation.nhs.uk/helping-you-to-decide/about-organ-donation/statistics-about-organ-donation/transplant-activity-report/">one in six people awaiting an organ transplant in the UK</a> will die or become ineligible due to deteriorating health before an organ is available. Many blame this situation on <a href="https://www.organdonation.nhs.uk/uk-laws/organ-donation-law-in-england/">England’s current “opt-in” donor scheme</a> – if you want to donate your organs after you die, you have to give express permission.</p>
<p>But that is about to change. From April 2020, everyone resident in England over the age of 18 will be deemed, in law, to have consented to the donation of their organs after death. If they don’t want to be a donor, people will have to “opt-out”.</p>
<p>This idea of “deemed consent” – assuming consent in the absence of a recorded refusal – will form the basis for the NHS having the power to remove and use organs. But it remains understandably controversial. Much of this debate could be avoided if we stopped talking about consent and started talking about altruism.</p>
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<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/organ-donation-campaigns-could-be-more-effective-if-they-focused-on-feelings-rather-than-facts-106555">Organ donation campaigns could be more effective if they focused on feelings rather than facts</a>
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</em>
</p>
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<h2>Presuming consent is flawed</h2>
<p>In law, consent is the main justification for interfering with a person’s body. It is about as close as the law comes to recognising that we can control what happens to our bodies without recognising the body as some form of property. Giving or withholding our consent is a way of controlling what happens to our bodies – in life and after death. But consent captures something much bigger than just “control”. Consent is one way of expressing our personal autonomy.</p>
<p>Autonomy can mean self-governance or self-determination – choosing the way that we want to live our lives and making decisions which reflect those choices. We can exercise our autonomy in all kinds of daily decisions – in the clothes we wear, the foods we eat, the political parties we vote for, and the intimate relationships we form.</p>
<p>Often, we would like to think that we make these choices because they reflect our own beliefs, opinions and values. Sometimes, our beliefs clearly motivate our actions and choices. I might choose to limit my sugar consumption because I believe that this will keep my body healthy. Or because it shows that I have some degree of self-restraint, which might be an important value for my own sense of self. In this simple example, we can see that autonomy represents a clear line flowing from my beliefs and values to my actions.</p>
<figure class="align-center ">
<img alt="" src="https://images.theconversation.com/files/277000/original/file-20190529-192361-1lavyj7.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/277000/original/file-20190529-192361-1lavyj7.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/277000/original/file-20190529-192361-1lavyj7.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/277000/original/file-20190529-192361-1lavyj7.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/277000/original/file-20190529-192361-1lavyj7.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/277000/original/file-20190529-192361-1lavyj7.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/277000/original/file-20190529-192361-1lavyj7.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=503&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
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<span class="caption">Some of our most unshakeable convictions change as we experience new things and meet new people.</span>
<span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/indoor-shot-group-multiracial-students-having-670358926">WAYHOME studio/Shutterstock</a></span>
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<p>But it’s not always so easy to identify our beliefs and values. <a href="http://www.bbc.com/future/story/20180622-the-surprising-reason-people-change-their-minds">It’s quite normal for these to change</a> – perhaps over the course of a few years, but maybe day to day. Some of our core preferences may remain clear and stable, unwavering in the face of challenging information or arguments. Intuitive convictions about the morality of, say, the death penalty, may prove to be unshakeable.</p>
<p>Others will vary depending on our moods, on the opinions of people around us, or following new experiences. We’re more likely to reflect on our attitudes towards controversial types of medical treatments, such as care at the end of life or abortion, <a href="https://www.npr.org/2019/05/18/724656365/2-women-discuss-their-shifting-views-on-abortion-rights?t=1559129374503">in light of personal experience</a>.</p>
<p>Some of our attitudes and beliefs may even be quite uncomfortable for us to hold. We may be ashamed about our desires and the choices we make in response to them. Sometimes we may not even fully understand why we do, or think, certain things – our beliefs can be incredibly contradictory and complex.</p>
<p>Consent – at least in the eyes of the law – appears to be about making simple decisions that are informed by our beliefs, which we can fully understand and identify with. But the reality is that our decision-making process, our identities and sense of selves are far more complicated than that.</p>
<h2>For a kinder society</h2>
<p>Controlling our bodies, and stopping others from interfering with them, is central to our autonomy. Our bodies are perhaps the most intimate part of our selves. Granting another person access to our bodies – even taking parts away from that body – has the potential to bring about the most serious conflicts in our beliefs and values.</p>
<p>If we may struggle to understand our own “autonomy”, and what it means to make autonomous decisions, then it seems to be an impossible task to presume to know what others believe and to decide with certainty how they would like their bodies to be dealt with.</p>
<p>Rather than speculating about how people may feel about donation, we should be more open about the aspirations of the organ donation project – to foster a society where people want to donate because this could help others to continue living their lives. </p>
<figure class="align-center ">
<img alt="" src="https://images.theconversation.com/files/277003/original/file-20190529-192428-1utigk2.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/277003/original/file-20190529-192428-1utigk2.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/277003/original/file-20190529-192428-1utigk2.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/277003/original/file-20190529-192428-1utigk2.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/277003/original/file-20190529-192428-1utigk2.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/277003/original/file-20190529-192428-1utigk2.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/277003/original/file-20190529-192428-1utigk2.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=503&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
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<span class="caption">Rather than presuming the consent of organ donors, why not presume their kindness?</span>
<span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/close-up-hand-man-hold-hands-1025677720?src=RN1qW1_PFsjWf7oXc-TzNg-1-10">Kriang kan/Shutterstock</a></span>
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</figure>
<p>This nudge towards altruism is already implicit in the law. Even the new legislation’s name – <a href="https://www.bbc.co.uk/news/health-47359682">Max and Keira’s Law</a> – evokes the story of a nine-year old girl whose tragic death allowed 11-year old Max a life-saving heart transplant. Emotive stories of good deeds might shift attitudes in the short term, but a more systemic, deeply engrained approach towards altruism is needed to secure a lasting shift.</p>
<p>For many, the decision to donate is already motivated by altruism – the desire to help others without reward. The law reflects this – it’s a criminal offence to offer or receive a reward for an organ donation. If the law can be so blatant in its presumption of altruism here, why not be as explicit in the legal basis of donation? Instead of trying to presume consent, why not presume that altruism is a shared social value worth protecting and promoting?</p><img src="https://counter.theconversation.com/content/117685/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Morgan Shimwell does not work for, consult, own shares in or receive funding from any company or organisation that would benefit from this article, and has disclosed no relevant affiliations beyond their academic appointment.</span></em></p>England is moving to an opt-out organ donation scheme. Here’s how it could be a success.Morgan Shimwell, Lecturer in Medical Law, Nottingham Trent UniversityLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1150512019-05-01T23:26:26Z2019-05-01T23:26:26ZA little nudge goes a long way in increasing organ donor registrations<figure><img src="https://images.theconversation.com/files/271242/original/file-20190427-194612-q62rkj.jpg?ixlib=rb-1.1.0&rect=0%2C0%2C3000%2C2182&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">A Nova Scotia woman displays the tattoo that marks her two liver transplants at the provincial legislature in Halifax in April 2019. The province's Human Organ and Tissue Donation Act will allow Nova Scotians to donate their organs and tissue unless they opt out.</span> <span class="attribution"><span class="source">THE CANADIAN PRESS/Andrew Vaughan</span></span></figcaption></figure><p>Each year, hundreds of Canadians die waiting for organ transplants. <a href="https://blood.ca/en/news-and-events/newsroom/system-progress-data-show-continued-improvement-in-deceased-organ-donation-rates">At the end of 2017, for example, 4,333 people were waiting for transplants; 242 of them died.</a></p>
<p>Many of these deaths could be prevented if people signed their organ donor registration cards. And even though the vast majority of <a href="https://organtissuedonation.ca/en/about">Canadians support organ donation, less than 23 per cent have made plans to donate.</a></p>
<p>With <a href="https://www.beadonor.ca/about-donation">one organ donor having the potential to benefit more than 75 people and save up to eight lives</a>, is there a way to encourage more people to sign an organ donor card? Our research reveals there is.</p>
<p>Behavioural science tells us that there are some key psychological barriers that prevent people from becoming organ donors, including what’s known as the <a href="https://science.sciencemag.org/content/302/5649/1338">status quo bias</a> — meaning we tend to stick with the status quo, or current state of affairs, even when making a change would better align with our personal beliefs and goals.</p>
<p>Developing interventions to overcome these barriers has the potential to close the gap between the <a href="https://www.ipsos.com/en-ca/most-canadians-81-willing-donate-their-organs-case-their-death">81 per cent of Canadians who indicate they’re willing to donate their organs after death</a> and the mere 23 per cent who are registered.</p>
<p>In fact, during an eight-week trial conducted with the Ontario government at one Service Ontario centre, <a href="https://www.ontario.ca/page/behavioural-insights-pilot-project-organ-donor-registration">such interventions led to a dramatic increase in organ donor registrations</a>.</p>
<h2>Nudging people into action</h2>
<p>Those who haven’t given the idea much thought are sometimes caught off guard by the question of whether they want to donate their organs after death. And when people are asked to make a decision that they don’t feel they’ve put adequate time and effort into considering, they choose not to decide. They put it off. </p>
<p>In many jurisdictions, the decision to donate organs happens most often when people renew their driver’s licences or health cards. <a href="https://www.ontario.ca/page/behavioural-insights-pilot-project-organ-donor-registration">In Ontario, for example, 85 per cent of organ donor registrations occur at Service Ontario centres via a prompted-consent system.</a> Customer service representatives ask if people are willing to register to be an organ donor.</p>
<figure class="align-left zoomable">
<a href="https://images.theconversation.com/files/271244/original/file-20190427-194612-1x8883q.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="" src="https://images.theconversation.com/files/271244/original/file-20190427-194612-1x8883q.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=237&fit=clip" srcset="https://images.theconversation.com/files/271244/original/file-20190427-194612-1x8883q.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/271244/original/file-20190427-194612-1x8883q.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/271244/original/file-20190427-194612-1x8883q.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/271244/original/file-20190427-194612-1x8883q.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/271244/original/file-20190427-194612-1x8883q.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/271244/original/file-20190427-194612-1x8883q.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=503&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
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<span class="caption">A kidney transporter provides a sealed, sterile environment while the organ is being preserved outside the body.</span>
<span class="attribution"><span class="source">Trillium Gift of Life Network</span></span>
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</figure>
<p>To improve the process at Service Ontario centres and avoid surprising people with the question, a number of interventions were tested, from simplifying the organ donor registration form to providing the form earlier in the process and giving key information at optimal points in time. </p>
<p>Another change: At the top of each consent form, several statements in bold text were tested: “If you needed a transplant, would you have one?” And: “How would you feel if you or someone you loved needed a transplant and couldn’t get one?” </p>
<p>Such “nudge” statements are designed to motivate people to take action while maintaining their freedom of choice. These nudge statements helped people imagine themselves in the position of someone needing a transplant.</p>
<p><a href="https://www.ontario.ca/page/behavioural-insights-pilot-project-organ-donor-registration">The most successful changes from this Ontario pilot project led to a 143 per cent increase in organ donor registrations</a>. If rates were to rise similarly across the province, the Ontario government estimates it could increase organ donor registrants by more than 450,000 a year — up from the current number of approximately 200,000.</p>
<h2>The drawbacks of presumed consent</h2>
<p>Additional methods of increasing organ donor registrations have also been investigated in some jurisdictions. Presumed consent is one example — a system whereby individuals are automatically registered as donors unless they explicitly opt out.</p>
<hr>
<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/organ-donation-does-presumed-consent-work-49478">Organ donation: does presumed consent work?</a>
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</em>
</p>
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<p>In April, <a href="https://atlantic.ctvnews.ca/nova-scotia-legislature-passes-presumed-consent-law-for-organ-donation-1.4378612">Nova Scotia became the first jurisdiction in North America to adopt presumed consent for organ donations.</a></p>
<p>While there’s been some indication that <a href="https://science.sciencemag.org/content/302/5649/1338">countries with presumed consent have 60 per cent more of the population registered</a>, there is also evidence that it may be ineffective. <a href="https://www.sciencedirect.com/science/article/pii/S0041134513000390?via%3Dihub">Chile saw a decrease in organ donations when it implemented the system</a>, <a href="https://www.bbc.com/news/health-41199918">as did France and Brazil.</a></p>
<p>Part of the reason for the decline is that families have the last word. When you make the decision to become an organ donor, often your family is aware of your intent. But when the government assumes you want to donate your organs without your explicit consent, your family may overturn the decision after your death.</p>
<p>For these reasons it will be interesting to see the impact of Nova Scotia’s decision. </p>
<p>Meanwhile in Ontario, many of the insights uncovered by the pilot project conducted with Ontario’s Behavioural Insights Unit —including the nudge statements — are now used on <a href="http://www.forms.ssb.gov.on.ca/mbs/ssb/forms/ssbforms.nsf/GetFileAttach/014-3750-84%7E1/%24File/ATTFCBXW.pdf">Ontario’s organ and tissue donor registration consent form</a>, and data is being collected to determine how things have improved.</p>
<p>It’s a great example of how the government is using evidence-based decision-making to better serve its citizens, and how research into consumer behaviour can benefit society.</p>
<hr>
<p><em>Nicole Robitaille conducted this research with Nina Mazar, Claire Tsai and Elizabeth Hardy in partnership with the the Ontario Government’s Behavioural Insights Unit and the Behavioural Economics in Action research centre at the Rotman School of Management (BEAR).</em></p><img src="https://counter.theconversation.com/content/115051/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>In addition to her academic work, Nicole currently serves as a Trusted Advisor and Advisory Committee Member to the Government of Canada’s Impact and Innovation Unit. She also currently serves as an Advisor to the Ontario Government’s Behavioural Insights Unit (Treasury Board), where she formally worked as Chief Researcher.
</span></em></p>Most Canadians support organ donation after death, but fewer than 25 per cent have registered to donate their organs. What can be done to encourage more registrations?Nicole Robitaille, Assistant Professor of Marketing, Queen's University, OntarioLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1080772019-02-05T19:17:29Z2019-02-05T19:17:29ZWhose hearts, livers and lungs are transplanted in China? Origins must be clear in human organ research<figure><img src="https://images.theconversation.com/files/248605/original/file-20181204-23267-p3ouw7.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">It's not always clear where human organs come from in research papers. </span> <span class="attribution"><a class="source" href="https://unsplash.com/photos/U4FyCp3-KzY">Piron Guillaume/unsplash</a>, <a class="license" href="http://creativecommons.org/licenses/by/4.0/">CC BY</a></span></figcaption></figure><p>Scientist He Jiankui’s claimed use of the genetic tool CRISPR to <a href="https://theconversation.com/researcher-claims-crispr-edited-twins-are-born-how-will-science-respond-107693">edit the genomes of twin girls</a> led to <a href="https://www.theatlantic.com/science/archive/2018/12/15-worrying-things-about-crispr-babies-scandal/577234/">international condemnation</a>. His actions have focused a spotlight on research ethics – and what the consequences should be when scientists “<a href="https://apnews.com/13303d99c4f849829e98350301e334a9">go rogue</a>”.</p>
<p>The Chinese Academy of Science initially <a href="https://qz.com/1474814/the-cripsr-baby-news-was-carefully-orchestrated-pr-until-it-all-went-wrong/">looked into He’s conduct</a>, and a subsequent <a href="https://www.nytimes.com/2019/01/21/world/asia/china-gene-editing-babies-he-jiankui.html#click=https://t.co/XGWuV3PP4T">internal government investigation</a> has allegedly identified multiple violations of state laws. He has now been <a href="https://uk.reuters.com/article/us-china-health-babies/chinese-scientist-who-gene-edited-babies-fired-by-university-idUKKCN1PF0RA">fired by his university</a>. </p>
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Read more:
<a href="https://theconversation.com/tension-as-scientist-at-centre-of-crispr-outrage-speaks-at-genome-editing-summit-107807">Tension as scientist at centre of CRISPR outrage speaks at genome editing summit</a>
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<p>But beyond just this example, what does happen when scientists fail to comply with globally-accepted guidelines for ethical medical research? We examined this issue focusing on published research involving recipients of organ transplants performed in the People’s Republic of China.</p>
<p><a href="https://www.tts.org/index.php?option=com_content&view=article&id=11&Itemid=223">International professional standards</a> ban publication of research that:</p>
<ol>
<li>involves any biological material from executed prisoners</li>
<li>lacks human research ethics committee approval</li>
<li>lacks consent of donors.</li>
</ol>
<p>But as described in our <a href="https://bmjopen.bmj.com/content/9/2/e024473">new paper</a>, we found that research which does not comply with these standards is regularly accepted for publication in international peer-reviewed journals.</p>
<h2>Human organ transplants in China</h2>
<p>Using a scoping review methodology, we examined 445 studies published in peer reviewed English language journals between January 2000 and April 2017. The papers reported research involving recipients of human organ transplants (limited to hearts, livers or lungs) taking place in China. The data included 85,477 transplants.</p>
<p>We found that 92.5% of the publications failed to state whether or not the transplanted organs were obtained from executed prisoners. Nearly all of them (99%) failed to report whether organ donors gave consent. In contrast, 73% of papers reported approval from an institutional ethics committee for the research reported in the paper.</p>
<p>Widespread ethical concerns over the <a href="https://optn.transplant.hrsa.gov/resources/ethics/the-ethics-of-organ-donation-from-condemned-prisoners/">inability of condemned prisoners to give informed consent</a> for organ donation are exacerbated in the People’s Republic of China. Here, the <a href="https://www.amnestyusa.org/files/no-end-in-sight_torture-and-forced-confessions-in-china.pdf">judicial and police system lacks safeguards against procedural abuses</a>. <a href="https://www.springer.com/us/book/9783662460832">Faulty convictions are extensively documented and extremely difficult to redress</a>.</p>
<p>In addition, a <a href="https://endtransplantabuse.org/an-update/">growing body of credible evidence</a> suggests that organ harvesting is <a href="https://www.youtube.com/watch?v=ofQA7FVCoPc">not limited to condemned prisoners</a>, but also <a href="https://chinatribunal.com/draft-interim-judgement-and-closing-statement-by-sir-geoffrey-nice-dec-10-2018/">includes prisoners of conscience</a>. It is possible therefore — though not verifiable in any particular case — that peer reviewed publications may contain data obtained from prisoners of conscience killed for the purpose of organ acquisition.</p>
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Read more:
<a href="https://theconversation.com/real-bodies-controversy-how-australian-museums-regulate-the-display-of-human-remains-95644">Real Bodies controversy: how Australian museums regulate the display of human remains</a>
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<p>Who is responsible for ensuring that data based on research involving organs harvested from non-consenting prisoners is banned from publication? We argue in our paper that reviewers and journal editors have a role to play.</p>
<h2>Where do the organs come from?</h2>
<p>In 19 papers involving 2,688 organs transplanted prior to 2010, the source of organs was reported as voluntary donors. But as widely known in the transplantation community, there was no volunteer deceased organ donor program in China before a pilot started in 2010. It therefore seems reasonable to assume that organs may have been sourced from prisoners, making claims about volunteer donation unreliable.</p>
<p>The two journals that published the greatest number of Chinese transplant papers identified in our study are Transplantation Proceedings, with 65 of the total 445 papers, and PLOS ONE, with 20. Other journals with papers identified by this study include the American Journal of Transplantation, and Transplantation (the official journal of the peak international body, The Transplantation Society). These journals both have policies that explicitly prohibit the publication of research based on organ transplants from non-consenting and/or prisoner donors.</p>
<p>We argue that, if they are not already doing so, reviewers and medical journals should demand information about the source of organs in Chinese transplant research before these are published for the broader public and scientific communities. If they are demanding such information, the responses to those demands should be published. And if they are not satisfied with the responses, they should refuse to publish the research.</p>
<p>When a paper is published without identifying the source of the transplanted organs, it risks sending the message that ethical standards may be ignored or breached. This undermines the incentive to comply with these standards in the future.</p>
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<em>
<strong>
Read more:
<a href="https://theconversation.com/heres-what-australia-can-do-to-help-end-the-chinese-organ-trade-63701">Here's what Australia can do to help end the Chinese organ trade</a>
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</em>
</p>
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<h2>We’re all responsible</h2>
<p>Our findings raise important and disturbing questions about ethical oversight on the part of all of those involved in the process of reviewing and publishing transplantation research.</p>
<p>In response, we propose large-scale retractions of the papers identified by our research that are not consistent with international standards regarding organ donation. </p>
<p>We also propose a moratorium on all clinical transplant publications from China pending an international summit. The summit of transplantation community members and other stakeholders could develop appropriate policies and processes for handling future research.</p>
<p>Our hopes for these retractions are, however, not high. As one of us (Rogers) found, <a href="https://onlinelibrary.wiley.com/doi/abs/10.1111/liv.13244">securing a retraction</a> can be a prolonged process even where there is evidence of overt falsehood in the paper.</p>
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<figure class="align-center ">
<img alt="" src="https://images.theconversation.com/files/250182/original/file-20181212-76974-27hzoo.png?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/250182/original/file-20181212-76974-27hzoo.png?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=480&fit=crop&dpr=1 600w, https://images.theconversation.com/files/250182/original/file-20181212-76974-27hzoo.png?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=480&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/250182/original/file-20181212-76974-27hzoo.png?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=480&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/250182/original/file-20181212-76974-27hzoo.png?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=603&fit=crop&dpr=1 754w, https://images.theconversation.com/files/250182/original/file-20181212-76974-27hzoo.png?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=603&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/250182/original/file-20181212-76974-27hzoo.png?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=603&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">An article retracted due to concerns about the source of organs used for donation.</span>
<span class="attribution"><a class="source" href="https://onlinelibrary.wiley.com/doi/abs/10.1111/liv.13244">Screen shot captured on Dec 12 2018.</a></span>
</figcaption>
</figure>
<hr>
<p>Journals are reluctant to retract articles, and even <a href="https://retractionwatch.com/the-retraction-watch-leaderboard/top-10-most-highly-cited-retracted-papers/">retracted articles continue to be widely cited</a>.</p>
<p>Nevertheless, there is <a href="https://www.statnews.com/2018/11/21/research-misconduct-journals-hiring-research-integrity-czars/">growing interest in trying to uphold the integrity of published research</a>, as well as initiatives to <a href="http://www.alltrials.net/">demand the publication of all clinical trial data</a>. These initiatives offer some hope that breaches such as the ones we discovered will become less common.</p>
<p>As for the authors involved in retracted or ethically non-compliant research, there is little information about the impact on their careers. Being the author on a paper that is retracted may lead to a ban by the journal, trigger an institutional investigation, or have no effect.</p>
<p>Academic misconduct investigations by universities <a href="https://retractionwatch.com/2018/11/06/its-time-to-end-the-code-of-silence-at-universities/#more-76579">are rarely reported in the public domain</a>. Apart from high profile cases like that of He, the nature and extent of the consequences for researchers who breach ethical standards is largely unknown.</p><img src="https://counter.theconversation.com/content/108077/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Wendy Rogers is affiliated with the International Coalition to End Transplant Abuse in China (ETAC) which is an NGO. She is Chair of ETAC's International Advisory Committee. </span></em></p><p class="fine-print"><em><span>Matthew Robertson occasionally consults on a voluntary basis for End Transplant Abuse in China, a Sydney-based non-profit advocacy group concerned with abuses of organ transplantation in the People's Republic of China.</span></em></p>International standards ban publication of research that involves any biological material from executed prisoners, that lacks human research ethics committee approval and that lacks consent of donors.Wendy Rogers, Professor in Clinical Ethics, Macquarie UniversityMatthew P. Robertson, Doctoral student, Australian National UniversityLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1079192019-01-08T12:46:00Z2019-01-08T12:46:00ZThere are many complex reasons for South Africa’s organ donor shortage<figure><img src="https://images.theconversation.com/files/248726/original/file-20181204-34142-1w71r2d.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Many countries around the world can't meet the demand for donor organs.</span> <span class="attribution"><span class="source">Shutterstock</span></span></figcaption></figure><p>At any given time, there are around <a href="https://www.odf.org.za/info-and-faq-s/statistics.html">4300</a> people waiting for organ donations in South Africa. These patients usually need new livers, kidneys, lungs or hearts. But organ donors are in very short supply. </p>
<p>This isn’t unique to South Africa. Many countries around the world are unable to meet the demand for donor organs. There are a few exceptions, though. One example is <a href="https://journals.lww.com/annalsofsurgery/Abstract/2013/05000/Liver_Transplantation_for_Nonresectable_Liver.3.aspx">Norway</a>, where a surplus of deceased donor livers has been reported. </p>
<p>So what explains South Africa’s organ donor shortage? </p>
<p>Religious and cultural beliefs play a role, because they influence the decisions people make about the remains of their loved ones. Sometimes families prefer that a relative’s body remain whole and intact; in other cases it’s considered important to bury a person within a certain time frame. But attributing the shortages to these factors alone grossly oversimplifies the issue, as <a href="https://journals.sagepub.com/doi/abs/10.1177/1526924818765819?journalCode=pit">research</a> has shown.</p>
<p>There are many complex elements that keep donor numbers low. These permeate the social fabric from a population and legislation level down to the practice of health care workers in hospitals. </p>
<p>It’s important to tackle each of these elements to ease the country’s organ donor shortage.</p>
<h2>Public perception</h2>
<p>At a societal level, religious and socio-cultural practices do play a role in the shortage of donor organs. But in my <a href="https://www.researchgate.net/profile/Harriet_Etheredge">extensive research</a> into the factors influencing low donor numbers, other issues have come to the fore.</p>
<p>These include a suspicion of the biomedical system in South Africa. Sometimes there are perceptions that doctors and hospitals can’t be trusted, or that some aspects of practice are unethical.</p>
<p>Some of these opinions are justified; the so-called <a href="https://mg.co.za/article/2011-04-29-kidneygate-what-the-netcare-bosses-really-knew">kidneygate</a> saga of 2001 is one example of poor medical ethics. This scandal saw “donors” from poor families in Brazil flown to South Africa and paid a nominal sum for a kidney, which was implanted in most cases into wealthy Israeli recipients. The sale of human organs is illegal in South Africa, as it is in most other parts of the world. </p>
<p>The issue is also influenced by a negative and often sensationalist portrayal of organ donation in the <a href="https://www.bloomberg.com/news/articles/2011-11-01/organ-gangs-force-poor-to-sell-kidneys-for-desperate-israelis">media</a>, and <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1119465/">reports</a> of unethical research on the continent. </p>
<p>Suspicion breeds distrust. People question what will happen to their loved ones’ organs should they suspect that doctors and hospitals profit from donations. In the face of these questions, many families find it easier to refuse organ donation, especially in light of the mixed messages which are often communicated to the public.</p>
<h2>Legislation</h2>
<p>South Africa’s organ transplant legislation is vague. The <a href="https://www.gov.za/documents/national-health-act">National Health Act</a> admirably addresses the serious issue of organ trafficking and perverse incentives. It also specifically stipulates that consent to deceased organ donation can be written or oral, and can be given by a mentally competent person in the presence of two witnesses prior to that person’s death. </p>
<p>Technically, this means that a next-of-kin consent to organ donation isn’t actually required where the person stated a preference to donate during his or her lifetime. But the Act doesn’t go any further in adequately addressing the procurement of donor organs from people who are deceased. For example, the law doesn’t make it mandatory to offer all eligible families the option of donating a relative’s organs after brain-stem death, and the conflicts with common law norms are not resolved.</p>
<p>This has left a vacuum. Questions about the legal rights of a person to decide what is done with their remains after they have died need to be weighed against the family’s decision making rights. Families have some common law rights to determine the fate of the remains of their next-of-kin. </p>
<p>As a result, <a href="https://repository.up.ac.za/bitstream/handle/2263/40613/Labuschagne_Analysis_2013.pdf;sequence=1">written family consent</a> for organ donation is required in South Africa, though it is not a legal necessity. </p>
<p>Donors are lost at this point. A number of people who would willingly donate may fail to inform their families of their decision. People think that signing up as a donor is enough to guarantee that their organs will be considered for donation upon their death. But telling one’s family is in fact the most important thing. Even if a person has signed up as an organ donor during their lifetime, the family can still reverse this decision under the current system. They may be more likely to do so if the decision has not been communicated in advance.</p>
<p>Another challenge is that health care workers sometimes face difficult situations, for example, around concepts like brain-stem death. This is an essential step in the organ donation process, because only people who are legally certified as deceased can be deceased organ donors. In South Africa, brain-stem death is a legally accepted definition of death. This can be difficult to understand, especially when the patient is maintained on a mechanical ventilator, still looks pink and feels warm. When such a patient has been declared brain-stem dead they are unequivocally deceased. But it can be hard to believe. </p>
<p>In our <a href="https://journals.sagepub.com/doi/abs/10.1177/1526924818765819?journalCode=pitb">research</a>, we found that this was especially true for nursing staff, for whom the saving and maintenance of life is an imperative goal. There was a sense that the person was being “killed” even though the donor is already dead. </p>
<h2>Finding solutions</h2>
<p>It’s clear, then, that no single factor is keeping organ donor numbers low in South Africa. Policymakers, health care professionals, civil society advocacy groups and academics must work collaboratively to address these issues if the situation is to be improved.</p>
<p>There are a number of countries that have increased their donor numbers by introducing more robust policy. The most notable is <a href="https://mosaicscience.com/story/spain-uk-organ-donation-transplants-liver-kidney-heart-lungs-surgery-nhs/">Spain</a>, where they have adopted an “opt-out” system under which it’s assumed that a person consents to organ donation when they die, unless they have issued a clear, written statement to the contrary.</p><img src="https://counter.theconversation.com/content/107919/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Harriet Etheredge does not work for, consult, own shares in or receive funding from any company or organisation that would benefit from this article, and has disclosed no relevant affiliations beyond their academic appointment.</span></em></p>Religious and cultural beliefs play a role in the country’s organ donor shortages. But these factors alone grossly oversimplifies the issue.Harriet Etheredge, Bioethicist and Health Communication Specialist, University of the WitwatersrandLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1083362018-12-12T02:56:50Z2018-12-12T02:56:50ZAn opt-out system isn’t the solution to Australia’s low rate of organ donation<figure><img src="https://images.theconversation.com/files/249863/original/file-20181211-76977-1brb1u2.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">If the family doesn't agree, the surgery won't go ahead.</span> </figcaption></figure><p>Organ transplantation relies on the generosity of a person to volunteer their organs for donation after death, or the generosity of the family to gift or donate the organs of their deceased relative.</p>
<p>But last year, the organs of just 510 deceased donors were transplanted into Australian recipients. This amounts to <a href="http://www.irodat.org/?p=database&c=AU#data">20.7 donations per million people</a> and puts Australia down to 17th place <a href="http://www.irodat.org/img/database/pdf/IRODaT%20newletter%20Final%202016.pdf">for international deceased organ donation</a>.</p>
<p>Last week, a <a href="https://www.aph.gov.au/Parliamentary_Business/Committees/Joint/Foreign_Affairs_Defence_and_Trade/HumanOrganTrafficking/Tabled_Reports">parliamentary committee report on organ donation and trafficking</a> made a number of recommendations for the Australian government, including investigating whether an opt-out system of organ donation could help increase donation rates. </p>
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<em>
<strong>
Read more:
<a href="https://theconversation.com/heres-what-australia-can-do-to-help-end-the-chinese-organ-trade-63701">Here's what Australia can do to help end the Chinese organ trade</a>
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</em>
</p>
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<p>Several countries have recently made the switch from opt-in to opt-out systems. But this <a href="http://www.bbc.com/news/health-41199918">hasn’t necessarily increased organ donation rates</a>. One reason is if someone hasn’t actively opted in, their family members will still need to consent to their organs being removed. And where families don’t consent, the donation doesn’t proceed. </p>
<h2>Opt-in vs opt-out</h2>
<p>In Australia, a person must <a href="https://donatelife.gov.au/register-donor-today">register to donate</a> their organs or tissues. This is sometimes referred to as an opt-in system of organ donation. </p>
<p>While <a href="https://donatelife.gov.au/about-donation/get-facts/facts-and-statistics">69% of Australians</a> believe organ donation is important, only one in three people are registered as organ donors. </p>
<p>In an attempt to boost similarly low donation rates, a number of countries – including <a href="https://beta.gov.wales/organ-donation/register-your-decision">Wales</a>, <a href="https://www.icelandreview.com/news/all-icelanders-are-now-organ-donors/">Iceland</a> and now <a href="https://www.organdonation.nhs.uk/supporting-my-decision/the-opt-out-system/">England</a> (by mid-2020) – have switched to opt-out systems. </p>
<p>In an opt-out system, a person is automatically presumed to have given their consent to be a donor before their death unless they had made a specific request not to donate their organs. So, organs may be taken unless people have registered an objection not to be donor, or their family members (next of kin) object. This is known as a “soft opt-out”.</p>
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<p>
<em>
<strong>
Read more:
<a href="https://theconversation.com/how-we-can-increase-australias-organ-donation-rate-42704">How we can increase Australia's organ donation rate</a>
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</em>
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<p>In 2017, <a href="https://www.thelancet.com/pdfs/journals/langas/PIIS2468-1253(17)30037-7.pd%5D">France introduced a law</a> that requires doctors to only inform the relatives about which organs are to be procured, and not ask their permission to procure. This is an example of a “hard opt-out” system. </p>
<p>We believe the consent of the family members (next of kin) should always be sought if a person has not registered their consent before death for their organ to be procured. </p>
<p>Historically, Australian governments have been wary of adopting an
opt-out system of organ donation. </p>
<p>Despite several states considering reforming the current organ donation system and a <a href="http://www.abc.net.au/news/2016-02-02/low-organ-donation-rates-in-australia-demand-need-for-changes/7132644">2016 independent review</a> looking at options to boost donation rates, an opt-out system was not considered preferable. We suspect this was because people tend to react negatively when their choice is taken away.</p>
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<img alt="" src="https://images.theconversation.com/files/249865/original/file-20181211-76989-iscl16.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/249865/original/file-20181211-76989-iscl16.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=399&fit=crop&dpr=1 600w, https://images.theconversation.com/files/249865/original/file-20181211-76989-iscl16.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=399&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/249865/original/file-20181211-76989-iscl16.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=399&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/249865/original/file-20181211-76989-iscl16.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=502&fit=crop&dpr=1 754w, https://images.theconversation.com/files/249865/original/file-20181211-76989-iscl16.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=502&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/249865/original/file-20181211-76989-iscl16.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=502&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
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<span class="caption">There were just 510 deceased organ donors in Australia last year.</span>
<span class="attribution"><a class="source" href="https://www.shutterstock.com/download/confirm/1159209784?src=6ueJ6xpFUHjwAWifoJ9AqA-1-1&size=huge_jpg">Nimon/Shutterstock</a></span>
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</figure>
<h2>Family consent</h2>
<p>There is <a href="http://www.bbc.com/news/health-41199918">no conclusive evidence</a> opt-out systems of organ donation increase the number of donors available.</p>
<p>An opt-out system is <a href="https://papers.ssrn.com/sol3/papers.cfm?abstract_id=3171301">unlikely to increase donation rates</a> without the consent of the family.</p>
<p>In our society, the family have always been responsible for decisions about a burial or cremation of the body of their relative. Arbitrarily violating this right would cause psychological harm and no direct benefit. </p>
<p>You only have to consider the anger and grief of parents in the scandal that broke out in 1999 around the non-consensual <a href="https://www.theguardian.com/society/2001/jan/30/health.alderhey1">harvesting of their children’s organs</a> at a UK hospital. It shows how devastating un-consented procurement of organs of a deceased relative would be. </p>
<p>There are other reasons why non-consensual organ procurement would cut across social expectations. Autopsies are now not performed routinely and if conducted are not without the consent of relatives. This further adds to the notion relatives have decision-making rights. </p>
<p>Are we to have an opt-out system which includes all citizens? Who would dare tell parents their dead child’s organs are to be compulsorily procured? Who would ignore the practices of certain religions which expect the deceased body to be buried intact? These are all insurmountable obstructions to hard opt-out systems. </p>
<p>There is significant variability in how opt-out systems work. Take Spain, for example. It <a href="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3914429/">introduced an opt-out system</a>, often referred to as a presumed consent model, in 1979 and it took almost a decade <a href="https://www.cambridge.org/core/books/organ-shortage/institutional-organisation-and-transplanting-the-spanish-model/7F30C5E9938CD38A7D4CF1092AEB5ADA">before donation rates increased</a>. Even when they did, Spain’s success was due largely to close consultation with family members, <a href="https://www.independent.co.uk/news/long_reads/spain-leads-world-organ-donation-organ-transplant-health-science-a8417606.html">which continues today</a>.</p>
<p>Brazil <a href="http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(05)60767-2/abstract">also introduced</a> a presumed consent system of organ donation but abolished it after a year and a half, in late 1998. This was due to uncertainty, fear and mistrust of the medical profession prematurely declaring people dead to remove organs. </p>
<p>And even under the presumed consent system, the majority of doctors would only remove organs from the deceased after receiving consent from family members.</p>
<h2>Gift of life</h2>
<p>Opt-out systems of organ donation go against the very concept of gifting or donating. It’s taking organs without consent, as opposed to donation. It <a href="https://jme.bmj.com/content/36/10/627.info">presumes consent</a> by the deceased when none exists.</p>
<p>As a society, we need to normalise organ donation and dispel the fears, myths and perhaps sheer ambivalence that surrounds it.</p>
<p>We need to encourage innovative education programs and engagement with individuals and families to promote robust, honest and meaningful conversations about organ donation.</p>
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Read more:
<a href="https://theconversation.com/organ-donation-campaigns-could-be-more-effective-if-they-focused-on-feelings-rather-than-facts-106555">Organ donation campaigns could be more effective if they focused on feelings rather than facts</a>
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<p>It may be difficult to have conversations about organ donation with families after a tragic accident or a sudden death. But, where possible, doctors should engage families in discussions about organ donation early on.</p>
<p>Family members should be encouraged to respect the wishes of the deceased, whether that was via the organ donation register, a prior conversation, or by any other means.</p>
<p>It’s unlikely there will be an adequate supply of organs to meet the demand anytime soon in Australia. There is no simple solution or quick fix to increase organ donation rates, but an opt-out system is not the answer. </p>
<p>Organ donation should continue to be just that – a donation. Based on the generosity and free will of the donor by virtue of a gift, and not based on a default system of taking without consent.</p><img src="https://counter.theconversation.com/content/108336/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>The authors do not work for, consult, own shares in or receive funding from any company or organisation that would benefit from this article, and have disclosed no relevant affiliations beyond their academic appointment.</span></em></p>A parliamentary committee report recommends the Australian government investigate whether an opt-out system could help increase donation rates. But the evidence suggests it wouldn’t.Neera Bhatia, Senior Lecturer in Law, Deakin UniversityJames Tibballs, Associate Professor and Intensive Care Specialist, Royal Children's HospitalLicensed as Creative Commons – attribution, no derivatives.