tag:theconversation.com,2011:/fr/topics/tissue-donation-3594/articlesTissue donation – The Conversation2015-08-14T12:30:37Ztag:theconversation.com,2011:article/457402015-08-14T12:30:37Z2015-08-14T12:30:37ZExplainer: what are the issues around the use of human foetal tissue?<figure><img src="https://images.theconversation.com/files/91033/original/image-20150806-5241-1vekygm.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://commons.wikimedia.org/wiki/File:Humanstemcell.JPG">Ryddragyn </a></span></figcaption></figure><p>Based on the furore <a href="https://www.washingtonpost.com/posteverything/wp/2015/08/04/despite-their-planned-parenthood-outrage-many-republicans-in-congress-once-supported-fetal-tissue-research/">currently engulfing the US</a>, you might imagine that the use of foetal tissue is illegal. But in fact the collection and use of cells obtained from a human foetus following miscarriage or abortion has a long history in medical science.</p>
<p>However, the US has a very long and established tradition of collecting and using human foetal tissue for scientific purposes. The Carnegie Collection, founded in 1914, contains thousands of human foetuses and gives its name to the <a href="http://www.ehd.org/virtual-human-embryo/stage.php?stage=1">Carnegie stages</a> that chart foetal development.</p>
<p>It is legal in the US to <a href="https://oir.nih.gov/sourcebook/ethical-conduct/research-ethics/fetal-tissue-research/statutes-governing-human-fetal-tissue-research">use foetal tissue for research</a>, something overseen by the <a href="http://www.nih.gov/">National Institute of Health</a>. There have been intermittent but sometimes violent protests against the practice due to its association with abortion, itself a controversial issue in the US. Now secret footage of a doctor from Planned Parenthood (a nationwide family planning clinic) apparently discussing the sale of foetal tissue has raised the issue, and tempers, once more.</p>
<h2>When only human genetic material will do</h2>
<p>Foetal tissue is important for many promising fields of medical research. It’s now well-known that genetics holds the key to understanding normal and abnormal human biology, from congenital diseases, to cancer and almost all major human diseases and impairments. <a href="http://encyclopedia2.thefreedictionary.com/developmental+genetics">Developmental genetics</a> research, which studies how genes control the earliest stages of human growth, is an important area. </p>
<p>Some developmental genetics research can be conducted using non-human animals such as mice, but the most accurate and usable data comes from using human tissue. In order to progress, such genetic research needs human foetal tissue obtained from miscarriages or abortions. Sometimes these are referred to as post-implantation tissue to distinguish it from surplus embryos from IVF fertility treatments. </p>
<h2>Powering cures for disease</h2>
<p>Foetal tissue is also key as a source of stem cells, and for such things as the experimental use of foetal brain cells for treatments of conditions such as Parkinson’s disease and dementia. Human foetal tissue has played an important role in the development of contraception and artificial reproductive therapies, and foetal kidney cells were used to develop the polio vaccine that won the <a href="http://www.nobelprize.org/nobel_prizes/medicine/laureates/1954/">1954 Nobel Prize in Medicine</a>. </p>
<p>Developmental genetics seeks to identify the genes that are active at particular stages of human development. This not only improves the general knowledge of the role of genes, but also our understanding of the cause of major birth defects, of conditions that occur in later life, and those that can only be studied using human tissue.</p>
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<img alt="" src="https://images.theconversation.com/files/91063/original/image-20150806-5229-1g86p0n.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/91063/original/image-20150806-5229-1g86p0n.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=450&fit=crop&dpr=1 600w, https://images.theconversation.com/files/91063/original/image-20150806-5229-1g86p0n.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=450&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/91063/original/image-20150806-5229-1g86p0n.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=450&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/91063/original/image-20150806-5229-1g86p0n.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=566&fit=crop&dpr=1 754w, https://images.theconversation.com/files/91063/original/image-20150806-5229-1g86p0n.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=566&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/91063/original/image-20150806-5229-1g86p0n.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">
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<span class="caption">Come on, let’s split.</span>
<span class="attribution"><a class="source" href="https://commons.wikimedia.org/wiki/File:Embryo,_8_cells.jpg">ekem/RWJMS IVF Program</a></span>
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<h2>Legal evolution</h2>
<p>Of course using foetal tissue is a sensitive issue, and has always been strictly controlled and regulated in the UK. This began with the Peel Code of Practice in 1972, which was superseded by the <a href="http://jme.bmj.com/content/19/2/114.full.pdf">Polkinghorne Guidelines</a> in 1989. </p>
<p>One of the ethical concerns was that the use of foetal tissue for treating serious diseases would lead to an increased demand for tissue and potentially influence a woman’s decision to terminate a pregnancy. So the guidelines included a key principle that consent to donate foetal tissue for research must be obtained after the woman has decided to terminate her pregnancy and that she cannot specify the use to which the tissue is put. </p>
<p>Scandals such as at Alder Hey, where in 2001 medical researchers were found to have <a href="http://news.bbc.co.uk/1/hi/1136723.stm">illegally harvested organs and tissue</a> from dead children, caused a public outcry. Following a review, the government passed the Human Tissue Act 2004, which created the <a href="https://www.hta.gov.uk/human-tissue-act-2004">Human Tissue Authority</a> as an oversight body and made illegal collection and use of human tissue an offence.</p>
<p>The act does not regard foetal tissue as distinct from the other tissue from a woman donor, so the use of foetal tissue for research must comply with the same law and guidance that applies to all human tissue. A similar approach is taken in other nations including the US, despite the views of certain protest groups. Anti-abortion campaigners see foetal tissue research as unethical, even though foetal tissue obtained from miscarriages, rather than abortions, can assist research into miscarriage and congenital abnormality. </p>
<h2>An ongoing ethical debate</h2>
<p>Part of the controversy in the US is due to the issue of selling foetal tissue for profit. Buying and selling of human tissue is often seen as ethically challenging, even by those who are generally in favour of its use in medical research. The concern here is that buying and selling human tissue commodifies human beings and diminishes human value and dignity. </p>
<p>In the UK, as in many countries, donating tissue – whether for research or as blood, bone marrow or organ donors – is regarded as a moral act, an act of altruism and good citizenship. Many wish to see that remain free of monetary gain. But human tissue is already involved in many commercial transactions of one kind or another, such as sale of blood and tissue products to healthcare services. Perhaps most controversial is the interest shown in foetal tissue by the cosmetics industry.</p>
<p>There ought to be a wider and more informed debate about the use of all human tissue in research, because a lack of transparency will only stand in the way of proper ethical reflection on the practices that underpin such important aims as medical research.</p><img src="https://counter.theconversation.com/content/45740/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Simon Woods receives funding from European Union.</span></em></p>US row might suggest using feotal tissue is new - in fact it’s not only a long-held practice, but essential for many medical breakthroughs.Simon Woods, Senior Lecturer and Co-Director, Policy Ethics and Life Sciences Research Centre, Newcastle UniversityLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/312702014-09-08T05:26:09Z2014-09-08T05:26:09ZMore people can donate tissue than organs – so why do we know so little about it?<figure><img src="https://images.theconversation.com/files/58240/original/kbv72n8j-1409825420.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Eyes – windows on the soul?</span> <span class="attribution"><a class="source" href="http://commons.wikimedia.org/wiki/File:Siberian_eyes.jpg">Ángelo González</a>, <a class="license" href="http://creativecommons.org/licenses/by-sa/4.0/">CC BY-SA</a></span></figcaption></figure><p>Tissue and organ availability for use in transplant operations is influenced by many factors including <a href="https://theconversation.com/jumping-the-organ-queue-questions-some-core-principles-16099">getting people to register</a>, and the difficult task of discussing donation with those who are recently bereaved. A specific barrier to tissue donation is that so few people are aware of it. There is a lack of knowledge about how it differs from organ donation and also that many more people could donate tissues than organs after their death. </p>
<p>Tissues such as eyes, heart valves, skin, tendons and bone, are needed every day to carry out lifesaving and life-enhancing operations, from treating severe burns to conditions caused by disease and injury. Most people who die in hospitals could potentially contribute to this demand, not just those who become organ donors. </p>
<h2>Different donors</h2>
<p>A potential organ donor is someone who dies within an intensive care unit or emergency department. These individuals will have been ventilated via a machine as they are unable to breathe for themselves. Patients who die in this situation can donate their thoracic organs (heart and lungs), abdominal organs (kidneys, liver, spleen, bowel, pancreas), and also tissues such as eyes, skin, bone, tendons. </p>
<p>A potential tissue donor would be someone who dies outside of these areas and is not ventilated and therefore organ donation is not an option. For this reason far more people could be tissue donors than can be organ donors. </p>
<h2>Barriers to donation</h2>
<p>The thought of donating creates concerns for the bereaved about what should or should not be done to a body after death. People might be reluctant to donate the heart of a deceased relative, for example, as for some the heart is seen as a repository of the soul. Likewise the eyes are the least donated tissue because for many they represent the windows to the soul. Eyes are often spoken of as the most meaningful feature of a person and requests for eye donation often stimulate strong reactions from family members who may not realise how life changing donation can be for someone in need of corneal repair and replacement.</p>
<p>Family members who decline donation may view the process as the sacrifice of an intact body to what they perceive to be a disfiguring operation – even though <a href="http://www.ncbi.nlm.nih.gov/pubmed/15848450">they may be unaware</a> of what actually happens. Eye donation for example, does not result in sunken eye sockets, a common concern; instead, small artificial contact lens-like caps are inserted into the socket with the eye lids closed over them to ensure eyes look as normal as possible. </p>
<h2>We can change the status quo</h2>
<p>Consent rates for tissue donation are heavily influenced by whether family members are aware of it, have been informed of the potential while at the hospital, are supportive of the idea more generally and know the wishes of the deceased. </p>
<p>These are important factors as, unlike organ donation, the approach and consent to tissue donation is made via a telephone call <a href="http://www.nhsbt.nhs.uk/tissueservices/">from Tissue Services</a>, usually once the next of kin has returned home from the hospital rather than via a face-to-face interview in the hospital. Without being previously informed about tissue donation the phone call will be unexpected, and for many, potentially unwelcome at a time of sadness and loss. </p>
<p>In situations where this is the case, consent rates can be as low as 24% of those approached, but when family members are informed about tissue donation the consent rate can be as high as 77% of those approached. </p>
<p>So it is essential that we raise public awareness of tissue donation, the benefits and challenges it brings, and what can be achieved. We need to ensure that healthcare workers are knowledgeable about this end-of-life option and inform family members about it. And we need to ensure that society in general is aware of what people who become tissue donors achieve by contributing to transplant operations and the bio-medical research that develops treatments for acute and chronic illnesses and injuries that impact all of our lives.</p>
<p>When we began our research into tissue donation at Southampton, <a href="http://www.ncbi.nlm.nih.gov/pubmed/7819612">there was little interest</a> in families’ decisions about tissue donation; the spotlight was fully focused on organ donation. Now we know much more about what people think about tissue donation, their fears, their experiences, and importantly factors that impact on consent rates.</p>
<h2>What you can do?</h2>
<p>Sign up on the new <a href="https://www.organdonation.nhs.uk/how_to_become_a_donor/registration/consent.asp">online donor register</a> where you can indicate that you are willing to donate. You will be offered options which ensures that what you do and do not want to donate is clear, but most importantly, tell your family and friends what your wishes are regarding donation as they will be asked to consent on your behalf. If they know what you wanted they can ensure it happens.</p><img src="https://counter.theconversation.com/content/31270/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Tracy Long-Sutehall 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>Tissue and organ availability for use in transplant operations is influenced by many factors including getting people to register, and the difficult task of discussing donation with those who are recently…Tracy Long-Sutehall, Principal Research Fellow, University of SouthamptonLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/84312012-08-16T20:38:44Z2012-08-16T20:38:44ZExplainer: what is tissue donation?<figure><img src="https://images.theconversation.com/files/14318/original/jw48hw6f-1345091191.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Transparency in donation processes gives families confidence about giving tissue and organs.</span> <span class="attribution"><span class="source">Senior couple talking to doctor photo from www.shutterstock.com</span></span></figcaption></figure><p>Every year a number of grieving families will be <a href="http://www.donatelife.gov.au/discover/about-donation">asked to donate</a> tissue following the death of a relative. The consequences of their decision have implications for <a href="http://www.nhs.uk/Conditions/Organ-donation/Pages/Definition.aspx">patient’s awaiting transplantation</a>, and the donor families.</p>
<p>Tissue is donated to infants requiring cardiac surgery for survival; burns victims dependent on skin; children who face limb amputation due to bone cancer; athletes with shattered tendons, and people of all ages who require eye tissue to see.</p>
<p>It’s vital that donor families (and people yet to decide about donating), know that their gift is of enormous value to the recipients of the transplanted tissue, their families and community. And, equally importantly, that the process is well regulated.</p>
<h2>Murky dealings</h2>
<p><a href="http://www.icij.org/tissue/traceability-elusive-global-trade-human-parts">Recent investigations</a> have revealed the dark side of human behaviour by exposing corruption in poorly-regulated international tissue donation practices. They’ve raised questions about the illicit trade in body parts and <a href="http://www.abc.net.au/4corners/stories/2012/08/09/3564210.htm">profiteering</a> from donated tissue.</p>
<p>It’s no surprise that tissues (like organs) are hugely valuable. They’re difficult to substitute artificially, and provide transformative therapeutic benefits. Like organs, tissue is a scarce resource and its value and method of recovery is poorly understood and obscured behind the veil of death.</p>
<p>Although most of the horror stories are generally confined to overseas practices, they add to the sense of disquiet some feel about donating body parts. And they counter the efforts of pro-donation public awareness campaigns to dispel the negative aura around giving body parts to others.</p>
<h2>Could it happen here?</h2>
<p>It’s important to examine the Australian experience after such revelations because there has to be transparency in donation processes so families can confidently give the gift of tissue, and where possible, organs.</p>
<p>In Australia, strictly regulated organ and tissue donation processes protect the public and are the responsibility of the <a href="http://www.tga.gov.au/">Therapeutic Goods Administration (TGA)</a> along with various other professional, medical and specialist bodies. And <a href="http://www.attorneygeneral.gov.au/Media-releases/Pages/2012/Second%20Quarter/30-May-2012---New-laws-to-crack-down-on-forced-marriage,-people-trafficking,-slavery-and-organ-trafficking.aspx">recent legislation</a> makes the traffic and sale of organ and tissue a crime. This aligns with Australia’s status as a signatory of the <a href="http://multivu.prnewswire.com/mnr/transplantationsociety/33914/docs/33914-Declaration_of_Istanbul-Lancet.pdf">Declaration of Istanbul on Organ Trafficking and Transplant Tourism</a>, an international collaboration to address the organ trade.</p>
<p>Perceptions are important and opportunities for exploitation exist whenever clinical, legal and regulator processes are unknown. Importantly, the community needs clarity about what to expect when a decision to donate tissue (or organs) is made on behalf of a relative. People need to be confident that strict regulatory processes are in place. And an important first step is to know what tissue donation is.</p>
<h2>What is tissue donation?</h2>
<p>In the context of therapeutic organ and tissue donation, tissue is specialised cellular structures that can survive without blood flow (and oxygen), for periods up to 24 hours, and are transplantable. This means that following most <a href="http://www.legislation.act.gov.au/a/1978-44/current/pdf/1978-44.pdf">deaths</a> (defined as breathing, heart and circulation have stopped, followed by brain function), it’s possible to donate tissue for up to 24 hours. This tissue can then be preserved for future use.</p>
<p>Tissue includes corneas (membrane on the surface of the eye), heart valves and vessels, tendons, skin, bone, pancreatic islets. But organs (heart, lungs, liver, kidneys, pancreas, intestines) perform specialist processes and their cells require a constant flow of oxygenated blood. Without circulation, the cells die and organs stop functioning within a very short time (minutes).</p>
<p>This means that unless there’s an extremely high expectation that a death will happen at a predicted time (enabling all the family agreements, legalities, processes, surgical teams and recipients to be in place when circulation stops and death is declared), donation surgery is pointless because the organs will not survive. This is why organ donation is rare.</p>
<p>Brain death is linked to organ donation because it’s the only instance when, despite confirmed <a href="http://www.google.com.au/search?q=definition+of+death+fanzics">death</a> (no blood flow to the brain or brain function), critical care experts can keep organs functioning until everyone has agreed and all requirements are met for organ donation surgery. With family agreement, the deceased is then transported (with the technology still preserving respiration, heart beat and organ function) to the operating theatre. This allows the organs to be recovered within minutes of the heart stopping.</p>
<p>It’s not uncommon to hear the term organ donation used interchangeably with tissue donation. This normally doesn’t matter but, when a family is being asked to donate, knowing the difference is extremely important. Unambiguous information about what happens when a decision to donate is made is vital for public confidence. And transparency protects the interests of deceased donors, their families and recipients.</p>
<p>When the needs of patients waiting for transplantation are subverted by distrust about donation practices, our society is damaged. Knowing what to expect before making the decision will increase confidence in and consent for organ and tissue donation.</p>
<p><br>
<em>See more <a href="https://theconversation.com/topics/explainer">Explainer articles</a> on The Conversation.</em></p><img src="https://counter.theconversation.com/content/8431/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Holly Northam received previous funding from Australian Organ and Tissue Donation Authority for an evalution of the Organ Donation and Transplant Coordinators Course (2011). </span></em></p>Every year a number of grieving families will be asked to donate tissue following the death of a relative. The consequences of their decision have implications for patient’s awaiting transplantation, and…Holly Louise Northam (née Terrell), Assistant Professor of Critical Care Nursing, University of CanberraLicensed as Creative Commons – attribution, no derivatives.