tag:theconversation.com,2011:/us/topics/bioethcs-3339/articlesBioethcs – The Conversation2020-02-23T13:13:49Ztag:theconversation.com,2011:article/1266762020-02-23T13:13:49Z2020-02-23T13:13:49ZNew DNA test that reveals a child’s true age has promise, but ethical pitfalls<figure><img src="https://images.theconversation.com/files/314570/original/file-20200210-109943-1amwqvc.jpg?ixlib=rb-1.1.0&rect=71%2C8%2C1845%2C1057&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Epigenetic clocks are a fascinating new technology, but some potential applications are controversial.</span> <span class="attribution"><a class="source" href="https://pixabay.com/photos/fantasy-portrait-clock-time-2790666/">(Pixabay/Stefan Keller)</a>, <a class="license" href="http://creativecommons.org/licenses/by/4.0/">CC BY</a></span></figcaption></figure><p>Epigenetic clocks are a new type of biological test currently capturing the attention of the scientific community, private companies and governmental agencies because of their potential to <a href="https://www.wired.com/story/new-tests-use-epigenetics-to-guess-how-fast-youre-aging/">reveal an individual’s “true” age</a>.</p>
<p>Over the past two years, companies such as <a href="https://www.chronomics.com/">Chronomics</a> and <a href="https://www.mydnage.com/">MyDNage</a> have started to sell epigenetic age tests to the public online, and the life insurance company <a href="https://www.yousurance.com/">YouSurance</a> has announced that it would be testing the epigenetic age of their policy holders to assign them to risk groups. Forensic scientists are also contemplating how epigenetic clocks could help <a href="https://www.sciencedirect.com/science/article/pii/S0168952518300611">determine the age of suspected criminals</a>.</p>
<p>Recently, the <a href="https://cmmt.ubc.ca/kobor-lab/">Kobor Lab</a> developed the first <a href="https://www.pnas.org/content/early/2019/10/09/1820843116.short">pediatric epigenetic clock</a> designed specifically for testing the age of young people, with an eye towards its applications in research and medical settings. This test uses a small sample of cells collected cheaply and easily from a cheek swab, and can predict a child’s age with a degree of precision within approximately four months.</p>
<p>But pediatric epigenetic clocks are likely to have non-medical applications as well. They could soon be used in immigration cases to prove the age of undocumented <a href="https://www.nature.com/articles/d41586-018-06121-w">migrants seeking asylum as minors</a>. Other future uses can be imagined, such as for child labour and trafficking surveillance, or even for the identification of child combatants in armed conflicts. </p>
<p>As researchers in bioethics, sociology and medical genetics, we are interested in the potential benefits and risks of this fascinating yet controversial new technology for individuals and society.</p>
<h2>The science of epigenetics</h2>
<p>Epigenetic clocks emerge from the <a href="https://www.nature.com/articles/d41586-019-03877-7">field of epigenetics</a>, which examines how chemical marks can regulate gene expression and help us understand how aging and disease processes work.</p>
<p>Epigenetics is the study of small molecules that bind to DNA or to the proteins DNA wraps around, changing how genes are read. These small molecules don’t change the linear sequence of the DNA, but they can turn genes on or off by opening or closing the 3D structure of DNA.</p>
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<img alt="" src="https://images.theconversation.com/files/314562/original/file-20200210-109943-1t8x8yn.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/314562/original/file-20200210-109943-1t8x8yn.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=338&fit=crop&dpr=1 600w, https://images.theconversation.com/files/314562/original/file-20200210-109943-1t8x8yn.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=338&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/314562/original/file-20200210-109943-1t8x8yn.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=338&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/314562/original/file-20200210-109943-1t8x8yn.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=424&fit=crop&dpr=1 754w, https://images.theconversation.com/files/314562/original/file-20200210-109943-1t8x8yn.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=424&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/314562/original/file-20200210-109943-1t8x8yn.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">
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<span class="caption">Small molecules cannot change the linear structure of DNA, but they can turn genes on and off by opening or closing the 3D structure of DNA.</span>
<span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/blue-dna-structure-isolated-background-3d-1238405779">(Shutterstock)</a></span>
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<p>If we think of genes as light bulbs, epigenetic marks can nudge the dimmer switch up or down, but they can’t change the colour of the light.</p>
<p>Some epigenetic marks can change in response to a <a href="https://www.niehs.nih.gov/research/supported/health/envepi/index.cfm">person’s environment</a> or <a href="https://dx.doi.org/10.18632%2Faging.101168">lifestyle</a>. Epigenetic tests may provide information about individuals that a genetic test alone can’t reveal — such as exposures to trauma, stress, diet or pollutants.</p>
<p>Other epigenetic marks change in a very constant fashion as a person develops, grows and ages. These marks have enabled the development of different epigenetic age tests. Also known as epigenetic clocks, these tests are poised to be the first epigenetic tests ready for use.</p>
<p>However, most epigenetic tests have not yet been scientifically validated to confirm their precision and accuracy in different sub-groups of the population, and the <a href="https://doi.org/10.3389/fgene.2018.00202">ethical, legal and social implications of their use are not well understood</a>.</p>
<h2>Lessons from DNA testing</h2>
<p>Like genetic tests, epigenetic tests may eventually be used in law enforcement and immigration settings, as well as in research and medical contexts. The lessons learned from DNA testing highlight the need for caution and responsible implementation.</p>
<p>Genetic research and testing now have many uses beyond detecting disease risks and tracing ancestry. DNA tests are common tools in <a href="https://cen.acs.org/articles/95/i37/Thirty-years-DNA-forensics-DNA.html">police investigations</a> to identify suspects and victims of crimes, and they are increasingly used by <a href="https://doi.org/10.1093/jlb/lsx012">immigration agencies</a> to prove genetic relationships in family reunification efforts.</p>
<p>In 2018, the identification of the suspected <a href="https://theconversation.com/how-cops-used-a-public-genealogy-database-in-the-golden-state-killer-case-95842">Golden State Killer</a> made it clear that biological information shared with public genetic genealogy databases could be <a href="https://www.theatlantic.com/science/archive/2019/10/genetic-genealogy-dna-database-criminal-investigations/599005/">mined by law enforcement agencies</a>. This case <a href="https://www.nytimes.com/2018/04/27/health/dna-privacy-golden-state-killer-genealogy.html">raised public and legal concerns about the privacy of genetic information</a>, and the uses of DNA stored by private companies and in government databases. </p>
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<a href="https://theconversation.com/dna-database-sold-to-help-law-enforcement-crack-cold-cases-128674">DNA database sold to help law-enforcement crack cold cases</a>
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<p>Due to the capacity of epigenetic tests to expose sensitive information about an individual’s developing environment, social conditions and life choices, the implementation of tests like the pediatric clock requires close attention to issues related to privacy, surveillance and basic human rights.</p>
<h2>Risks to basic human rights</h2>
<p>In an era of rising <a href="https://theconversation.com/citizens-in-the-west-should-care-about-discriminatory-immigration-policies-110312">xenophobic and protectionist immigration policies</a> across the globe, the benefits of gaining biological data should be critically considered against the risks to basic human rights inherent in the process of collecting another layer of information from a vulnerable population.</p>
<p>When genetic testing was proposed as a solution for family reunification for the thousands of children separated from their parents by U.S. Immigration and Customs Enforcement (ICE) raids and deportations, ethicists and advocacy groups <a href="https://www.vice.com/en_ca/article/evjwje/privacy-rights-group-sues-dhs-over-coercive-dna-tests-at-the-border">raised significant issues</a>, including the lack of informed consent and concerns about the long-term storage of DNA in either private databases or those previously used only for those accused of crimes.</p>
<p>The <a href="https://www.researchwithrutgers.com/en/publications/dna-testing-for-family-reunification-and-the-limits-of-biological">use of genetic tests to prove the biological relationship between family members seeking to re-unite in a country has also been criticized</a> for being ethically problematic for children in non-genetic families, and having potentially devastating consequences for members of genetic families if DNA test errors occur. These situations could impede the reunification of children with their primary caregivers.</p>
<p>Problems may also arise if epigenetic clocks are used in immigration cases before we fully understand and address their ethical, legal and social consequences.</p>
<p>For example, migrants who are minors may have been exposed to highly stressful experiences, malnutrition or medical conditions. Such exposures <a href="https://doi.org/10.1186/s13059-019-1824-y">can affect the results of epigenetic clock tests</a> which were developed based on the DNA of healthy children in developed countries. This makes their use in efforts to identify biological age problematic for both technical and ethical reasons.</p>
<h2>Responsible use of epigenetic clocks</h2>
<p>To date, there have been attempts but no official report of any police force or immigration agency successfully using an epigenetic clock test in solving a challenging criminal case or asylum claim.</p>
<p>However, it has come to our attention that researchers have been approached by governmental agencies interested in using the pediatric epigenetic clock in particular, and by migrants searching for ways to prove the age of their undocumented children in order to be granted access to legal privileges reserved only for minors.</p>
<p>The promises of epigenetics that <a href="https://doi.org/10.1093/eep/dvz019">circulate widely in public discourse</a> include the potential to control one’s genetic predisposition — such as disease risk — through lifestyle choices. With this type of attention, individuals in the general public may in fact be among the first interested in using these tests. Consumers gaining access to epigenetic tests online, and those seeking to use them to inform legal and policy decisions, should be aware of their current scientific limitations, as well as of <a href="https://doi.org/10.1038/s41576-020-0215-2">rising privacy and non-discrimination concerns</a>.</p>
<p><a href="https://doi.org/10.1038/s41597-019-0310-4">Standards of practice</a>, <a href="https://doi.org/10.1186/s13073-019-0646-6">ethical guidelines</a> and <a href="https://academic.oup.com/eep/article/5/3/dvz018/5571210">regulations</a> are critically needed to ensure the responsible use of epigenetic tests. Most urgently, there is a need to protect children and their caregivers from premature or socially inadmissible uses of pediatric epigenetic clock tests to ensure their promises are realized with their best interest in mind.</p>
<p><em>This is an updated version of a story originally published on Feb. 23, 2020. It clarifies the use of genealogy data in the Golden State Killer case.</em></p><img src="https://counter.theconversation.com/content/126676/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Charles Dupras receives funding from the Canadian Institutes of Health Research (CIHR) and the Office of the Privacy Commissioner of Canada (OPC). The content is solely the responsibility of the authors and does not necessarily represent the official views of the funding organizations.</span></em></p><p class="fine-print"><em><span>Martine Lappé receives funding from the National Human Genome Research Institute of the National Institutes of Health. Research informing this publication was supported by NIH Award Number R00HG009154: "Behavioral Epigenetics in Children: Exploring the Social and Ethical Implications of Translation." The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.</span></em></p><p class="fine-print"><em><span>Michael S. Kobor receives funding from the Canadian Institutes of Health Research (CIHR), Natural Sciences and Engineering Research Council of Canada (NSERC), Genome Canada, National Institutes of Health (NIH), National Science Foundation (NSF), Peter Wall Institute for Advanced Studies (PWIAS), Canadian Institute For Advanced Research (CIFAR), Networks of Centres of Excellence (NCE), and the R. Howard Webster Foundation. The content is solely the responsibility of the authors and does not necessarily represent the official views of the funding organizations.
</span></em></p>Pediatric epigenetic clocks have the potential to accurately assess biological age. However, possible applications in law enforcement and immigration raise ethical issues.Charles Dupras, Postdoctoral Fellow, Center of Genomics and Policy, McGill UniversityMartine Lappé, Assistant Professor of Sociology and Science, Technology, and Society, California Polytechnic State UniversityMichael S. Kobor, Canada Research Chair in Social Epigenetics and Professor, UBC Department of Medical Genetics, University of British ColumbiaLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/1172362019-05-24T13:02:13Z2019-05-24T13:02:13ZDoping soldiers so they fight better – is it ethical?<figure><img src="https://images.theconversation.com/files/276123/original/file-20190523-187176-1bdn0zf.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">A waxwork of Captain America on display at Madame Tussauds in Bangkok, Thailand. </span> <span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/bangkok-july-22-waxwork-captain-america-302674247?src=uDJsZqGalBddn6FkQUoHTw-1-13">Nuamfolio/Shutterstock.com</a></span></figcaption></figure><p>The military is constantly using technology to build better ships, warplanes, guns and armor. Shouldn’t it also use drugs to build better soldiers?</p>
<p>Soldiers have long taken drugs to help them fight. <a href="https://www.ncbi.nlm.nih.gov/pubmed/16018329">Amphetamines like Dexedrine were distributed widely</a> to American, German, British and other forces during World War II and to U.S. service members in Korea, Vietnam, Kuwait, Iraq and Afghanistan. In 1991, the <a href="https://www.nytimes.com/2003/01/19/us/threats-and-responses-military-bombing-error-puts-a-spotlight-on-pilots-pills.html">Air Force chief-of-staff stopped the practice</a> because, in his words, “Jedi knights don’t need them.” But the ban lasted only five years. DARPA, an agency that does cutting-edge research for the U.S. Department of Defense, is trying to make soldiers “kill-proof” by developing super-nutrition pills and substances to <a href="http://www.dana.org/Publications/pressbooks/Details.aspx?id=50128">make them smarter and stronger</a>. New drugs that reduce the need for sleep, such as modafinil, are being tested. Researchers are even looking into <a href="https://apps.dtic.mil/dtic/tr/fulltext/u2/a535866.pdf">modifying soldiers’ genes</a>.</p>
<p>As a <a href="https://law.case.edu/Our-School/Faculty-Staff/Meet-Our-Faculty/Faculty-Detail/id/135">professor of health law and bioethics</a>, I began studying the use of drugs to enhance performance in sports, and I soon became interested in the use of performance-enhancing drugs in the military. Most people think <a href="http://globalsportsdevelopment.org/2014/01/28/doping-survey-reveals-public-opinion/">doping in sports is harmful cheating</a>; shouldn’t that be how doping in combat is viewed? The answer, I decided, was no: Doping in sports doesn’t produce any meaningful social benefit, but using drugs to improve performance in the military could save lives and make it easier to complete missions.</p>
<p>But the military still needs rules for how performance enhancements should be used. </p>
<h2>Mandatory use</h2>
<p>Can soldiers be ordered to take enhancement drugs? What if the drugs have dangerous side effects? What if there hasn’t been a lot of research on their long-term effects? It’s also important to realize that the risks from performance-enhancing drugs are not only to the soldiers who use them; in 2004, pilots in Afghanistan who accidentally dropped a bomb that killed four Canadian soldiers <a href="https://www.globalsecurity.org/org/news/2003/030104-speed01.htm">blamed their mistake on being hopped up on amphetamines</a>.</p>
<p>Soldiers generally have to follow orders, so it’s important for their commanders to carefully think through whether use of these drugs should be mandatory or voluntary. Applying a set of principles that I developed to guide <a href="https://doi.org/10.1080/15027570.2014.992214">bioethical decision-making in the military</a>, superiors should force troops to use enhancement drugs only when the advantages that the drugs provide and the importance of the mission outweigh the risks to the user. <a href="http://jpsl.org/archives/defending-against-biochemical-warfare-ethical-issues-involving-coercive-use-investigational-drugs-and-biologics-military/">Soldiers in the Gulf War were required to take drugs</a> that hadn’t been approved for the purpose for which they were given, which was to try to provide some protection in case Saddam Hussein’s forces resorted to chemical or biological warfare. Congress stepped in and said that troops could be ordered to take drugs for such “off-label” purposes only if the president authorized it directly or declared a national emergency.</p>
<p>Opponents of doping in sports maintain that athletes who win races by doping should not be rewarded. Should we adopt the same policy in the military? Should soldiers who act bravely or shoot straighter with the help of drugs get promotions or medals? If the soldiers are ordered to use the drugs by their commanders, I suggest the answer should be yes, since it doesn’t seem fair to punish them for doing something about which they had no choice, especially if the drugs they were ordered to use could have serious side effects.</p>
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<img alt="" src="https://images.theconversation.com/files/276148/original/file-20190523-187143-4sbdn4.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&fit=clip" srcset="https://images.theconversation.com/files/276148/original/file-20190523-187143-4sbdn4.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=352&fit=crop&dpr=1 600w, https://images.theconversation.com/files/276148/original/file-20190523-187143-4sbdn4.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=352&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/276148/original/file-20190523-187143-4sbdn4.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=352&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/276148/original/file-20190523-187143-4sbdn4.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=442&fit=crop&dpr=1 754w, https://images.theconversation.com/files/276148/original/file-20190523-187143-4sbdn4.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=442&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/276148/original/file-20190523-187143-4sbdn4.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=442&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">Should soldiers take steroids to bulk up?</span>
<span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/muscular-male-body-testosterone-hormone-formula-1169361682?src=gNNI4xg4SDagO1a5jn0ZRQ-1-79">BLACKDAY/Shutterstock.com</a></span>
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<h2>Voluntary use</h2>
<p>What if soldiers take performance-enhancing drugs on their own, or if using them is illegal? A study in 2014 reported that <a href="https://doi.org/10.17226/12095">67% of active-duty service members</a> in all branches of the military took dietary supplements. In special forces like Navy SEALS, the percentage increases to over 75%.</p>
<p>What if these substances actually gave users a performance boost? The most popular doping drugs in sports are <a href="https://www.drugabuse.gov/drugs-abuse/steroids-anabolic">anabolic steroids</a>, which are Schedule III controlled substances that can be purchased legally only by prescription. In most states these can’t legally be prescribed for enhancement purposes. </p>
<p>You might think that the military should test soldiers to see if they were illegally using steroids just like athletes are tested in the Olympics, but currently the <a href="http://www.esd.whs.mil/Portals/54/Documents/DD/issuances/dodi/101016p.pdf">military is not allowed to do random drug testing</a> or “unit sweeps” for steroids. In short, the jury is still out on whether the military should reward or punish military success achieved with the aid of self-help drugs.</p>
<p>A final concern is when performance-enhancing drugs give troops advantages over civilians. Soldiers in the reserves, and those who serve on bases but reside with their families, have both military and civilian lives. What if they compete in sports or intellectual contests with civilians? One solution is to require them to disclose that they are taking enhancement drugs, but this could violate military secrecy and help enemies figure out ways of combating the drugs’ effects. </p>
<p>Some commentators argue that the effects of the drugs must be reversible, but soldiers may regard the advantages they get from the drugs as one of the benefits of being in the service; it could even be a recruiting incentive, like the prospect of being trained in a skill that can land them a good civilian job later.</p>
<p>Proper use of performance-enhancing drugs in the military could shorten wars and save lives. But with the development of more powerful drugs that increase strength and endurance and reduce the need for sleep and food, commanders need to carefully consider the risks to soldiers as well as the benefits for them and their mission.</p><img src="https://counter.theconversation.com/content/117236/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Maxwell Mehlman receives funding from the National Institutes of Health to study the ethical, legal, and social implications of using genomic technologies to enhance warfighter performance. He also was part of a team funded by the Greenwall Foundation that studied ethical, legal, and social implications of performance enhancement in the military.</span></em></p>Doping is condemned in sports. But what about in the military? Should soldiers be allowed or even encouraged to take drugs that make them superior fighters and more likely to complete a mission?Maxwell Mehlman, Professor of Biomedical Ethics, Case Western Reserve UniversityLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/690542016-11-23T01:31:06Z2016-11-23T01:31:06ZCryonics: hype, hope or hell?<figure><img src="https://images.theconversation.com/files/146925/original/image-20161122-24533-g9ulf9.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Cryonics has gone from the world of sci-fi movies to the law courts for the family of one 14-year-old girl.</span> <span class="attribution"><a class="source" href="https://www.shutterstock.com/download/confirm/448556179?src=5Y-z2JgrWhY3xks5CRFRMg-1-7&id=448556179&size=medium_jpg">from www.shutterstock.com</a></span></figcaption></figure><p>A 14-year-old dying girl has won the right to have her body cryonically preserved immediately after she died, according to a recent UK <a href="http://www.bailii.org/ew/cases/EWHC/Fam/2016/2859.html">High Court decision</a>.</p>
<p>The girl, known as JS, hoped that sometime in the future, when doctors found a cure for her cancer, she might be brought back to life. She had spent several months researching the science of cryonics and the judge had no doubt that she had sound capacity when making her decision.</p>
<p>The judge noted that under the UK’s <a href="http://www.legislation.gov.uk/ukpga/2004/30/contents">Human Tissue Act</a> cryonics is not illegal. However, it is unregulated. The closest the act comes to cryonics is regulating the freezing of sperm and embryos, in the form of cryopreservation. The judge did, however, acknowledge the need for new legislation relating to cryonics.</p>
<p>This case has received a huge amount of <a href="https://www.theguardian.com/science/2016/nov/18/teenage-girls-wish-for-preservation-after-death-agreed-to-by-court">public attention</a>.</p>
<p>But how realistic is cryonics’ chance of success? Is it a nonsensical waste of money and resources, selling snake oil for hope in dying patients? Or is it the new frontier of modern medical science, the path to post-humanism?</p>
<h2>What is cryonics?</h2>
<p>Cryonics involves freezing the body to preserve it immediately or very soon after death. The intention is to re-animate the body in the future, when doctors find a cure for the disease that caused death in the first place.</p>
<p>The general term cryogenics relates to the effects of low temperatures on materials. However, in this latest case, the judge referred to the practice of cryonics.</p>
<p>When a dead body is cryonically preserved, it is packed with ice and injected with anticoagulants, a treatment to stop blood from clotting. The body is then transported to one of <a href="http://www.cryonics.org/">three</a> <a href="http://www.alcor.org">cryonic</a> <a href="http://www.kriorus.com/en">centres</a> in the world.</p>
<p>There, in a process known as vitrification, the body is drained of its blood, which is then replaced with chemicals and anti-freeze. The body is placed in a sleeping bag and housed in a tank of liquid nitrogen at -196°C. The US company Alcor, for example, advertises cryonic preservation for the whole body costing about US$200,000 all up; preserving just the brain is cheaper, at around US$80,000. With some companies, people can pay with their life insurance. </p>
<p>The premise of cryonics is based on a possibility rather than a probability of success. There is no scientific evidence to suggest that it is possible to revive a person back to a living state. </p>
<p>Cryobiologists hope that with future technology, including nanotechnology, they will be able to <a href="http://www.bbc.com/news/health-38019392">repair cells and tissues</a> that are damaged during the freezing process. But they’ve not been successful yet.</p>
<h2>Is cryonics ethical?</h2>
<p>There are <a href="https://www.ncbi.nlm.nih.gov/pubmed/19788649">some arguments</a> in favour of cryonics, the simplest of which is one of free will and choice. As long as people are informed of the very small chance of success of future re-animation, and they are not being coerced, then their choice is an expression of their autonomy about how they wish to direct the disposal of their bodies and resources after death. </p>
<p>In this light, choosing cryonics can be seen as no different to choosing cremation or burial, albeit a much more expensive option.</p>
<p>However, this case raises several other ethical and problematic concerns. There is the issue of <a href="https://www.theguardian.com/science/2016/nov/18/top-uk-scientist-calls-for-restrictions-on-marketing-cryonics">potentially exploiting</a> vulnerable people. Some might argue vulnerable people are trading hype for hope. </p>
<p>But if we were to replace the science of cryonics with the promises of religious or spiritual healers made at the bedside of the dying – of earlier access to “eternal life” in return for large payments known as indulgences – would this be so different?</p>
<h2>Serious regulatory problems ahead</h2>
<p>Legal and ethical issues aside, there are other serious issues to consider.</p>
<p>How can dying people have confidence in the ability of a company to keep their remains intact? If the cryonic company were to cease operating because of financial difficulties, what would happen to the frozen body?</p>
<p>Although highly unlikely to work, cryonics if successful might harm people. Depending on the length of time they were preserved, what would they wake up to? They would have no living family, social or support networks. People would be reanimated into a world that has radically changed, with little or very few resources to support them.</p>
<figure class="align-right zoomable">
<a href="https://images.theconversation.com/files/146923/original/image-20161122-24569-1jqcaoj.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=1000&fit=clip"><img alt="" src="https://images.theconversation.com/files/146923/original/image-20161122-24569-1jqcaoj.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=237&fit=clip" srcset="https://images.theconversation.com/files/146923/original/image-20161122-24569-1jqcaoj.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=760&fit=crop&dpr=1 600w, https://images.theconversation.com/files/146923/original/image-20161122-24569-1jqcaoj.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=760&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/146923/original/image-20161122-24569-1jqcaoj.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=760&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/146923/original/image-20161122-24569-1jqcaoj.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=956&fit=crop&dpr=1 754w, https://images.theconversation.com/files/146923/original/image-20161122-24569-1jqcaoj.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=956&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/146923/original/image-20161122-24569-1jqcaoj.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=956&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px"></a>
<figcaption>
<span class="caption">What type of world would the girl at the centre of the latest court case wake up to?</span>
<span class="attribution"><a class="source" href="http://n.sinaimg.cn/translate/20161119/rLIt-fxxxauy0480201.jpg">Daily Mirror</a></span>
</figcaption>
</figure>
<p>In the case of JS, if she is re-animated in the future, who would act as her parent or guardian? Assuming the company is able to trace any family descendants, would they consent to looking after her needs? Would JS consent to being placed in their care? These are all unanswered questions with no immediate answers. </p>
<p>The cryonic process might work, but imperfectly. During the process of re-animation, there may be some brain damage. That would mean rather than waking up as you, you might be unconscious or trapped in some disordered, uncontrollable painful stream of consciousness. Companies must be required to test the success of their product; it remains to be seen what the markers of success of re-animation are.</p>
<p>It might be heaven but it might also be hell. The key issue is that people must be made aware of the risks as well as the benefits, and are not exploited.</p>
<p>Most troubling are the questions of natural justice. How long should people live? What is a fair innings? A life of 80 years, 100 years, 500 years? Do we have an obligation to die at some point and turn the world over to the next generation, instead of hanging around indefinitely? This is fast becoming an unavoidable question not only because of cryonics, but also because of the prospect of gene editing and regenerative medicine to prolong life.</p>
<p>Cryonics raises issues about the meaning of life and the definition of death. If someone was frozen before their heart stopped, would they be dead or in a state of suspended animation? Freezing might be an attractive alternative to conventional euthanasia.</p>
<h2>Could it happen in Australia?</h2>
<p>As early as 2017, New South Wales might see the launch of its first not-for-profit <a href="http://cryonics.org.au/">cryonic centre</a> that hopes to also act a self-regulatory body for the cryonics industry in Australia.</p>
<p>The sad and worrying part of this is that the case of JS might influence some desperate parents whose children are suffering incurable diseases to consider cryonics as a last chance of hope.</p>
<p>However, without any regulation or certainty in the law, this would be a disaster. If the cryonic process is not successful for JS or others, then at least it seems like a considerable waste of money. If it misfires, it could be an unparalleled disaster for the person or society.</p>
<p>If it is successful, the lack of any regulation (now or in the future) might mean that it is effectively like placing a person in a time-capsule to be woken at some stage in the future, with no guarantees about what that future looks like – technologically, materially, or socially.</p>
<p>It might not only be a hell for the individual – it might be a hell for the next generation, who are left to decide and care for “out of date” members of a previous generation.</p><img src="https://counter.theconversation.com/content/69054/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Julian Savulescu receives funding from the Oxford Martin School, Wellcome Trust and Uehiro Foundation on Ethics and Education. Member of Global Futures Council and NeoHumanitas Advisory Board.</span></em></p><p class="fine-print"><em><span>Neera Bhatia 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>A UK court has allowed a 14-year-old girl’s body to be frozen until doctors find a cure for the cancer that killed her. Is this latest example of cryogenics hope, hype or hell?Neera Bhatia, Senior Lecturer in Law, Deakin UniversityJulian Savulescu, Sir Louis Matheson Distinguishing Visiting Professor at Monash University, Uehiro Professor of Practical Ethics, University of OxfordLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/690642016-11-21T15:58:36Z2016-11-21T15:58:36ZQuestions you should ask yourself before getting cryogenically frozen<figure><img src="https://images.theconversation.com/files/146801/original/image-20161121-4518-1a9boht.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">Would you want to wake up in the future?</span> <span class="attribution"><span class="source">Veronika Surovtseva/Shutterstocl</span></span></figcaption></figure><p>A dying 14-year-old child recently <a href="https://www.theguardian.com/science/2016/nov/18/teenage-girls-wish-for-preservation-after-death-agreed-to-by-court">won the right to be cryogenically frozen</a> after her death following a UK court battle. In a letter to the judge, the child wrote: </p>
<blockquote>
<p>I think being cryo-preserved gives me a chance to be cured and woken up, even in hundreds of years’ time. I don’t want to be buried underground … I want to live and live longer and I think that in the future they might find a cure for my cancer and wake me up.</p>
</blockquote>
<p>The premature death of a young person is a particular tragedy and one cannot but be moved by the letter. <a href="http://www.dailymail.co.uk/news/article-3954116/Head-cryogenics-centre-British-girl-14-frozen-admits-patients-not-remember-thing-wake-s-revealed-child-just-SEVEN-signed-freezing.html">According to newspaper reports</a>, several children, some as young as seven, have also signed up to be frozen after their deaths. </p>
<p>Accurate figures of how many people have been cryogenically preserved are difficult to obtain because there is no system of recording this information. There are probably several hundred in the US and Russia where facilities are known to exist. There are no laws which ban the practice outright but there may be legal difficulties for cryonics because most countries specify how a dead body must be disposed of – and exclude long-term storage of this kind. </p>
<p>But what are the deeper moral and ethical issues of allowing the practice? And what would the consequences be if cryopreservation became mainstream?</p>
<p>Cryonics <a href="http://www.huffingtonpost.co.uk/entry/does-cryogenic-preservation-work-and-how-much-does-it-cost-everything-you-need-to-know_uk_582ed68ce4b09025ba31ddbb">is a process of deep cooling the body</a> with the aim of preserving the tissues at very low temperatures. In effect, it is a form of cold mummification. People who turn to cryogenics are usually captivated by the possibility of having their body preserved until some indeterminate future time when it is imagined that science and technology will be capable of curing any cause of death, repairing damaged tissues and, most importantly, bringing them back to life. </p>
<p>But is such a thing plausible? Human and other animal tissues can of course be preserved. The corpses of mammoths, preserved in the permafrost, <a href="https://www.geneticliteracyproject.org/2015/03/25/mammoth-dna-successfully-resurrected-but-cloning-wont-happen-anytime-soon/">have been shown</a> to have viable fragments of DNA after thousands of years. More to the point, human sperm and embryos can also be preserved for several years and still retain the capacity for life. Although most scientists are extremely sceptical about the possibility of ever reanimating a corpse that has been cryogenically frozen, it only takes one person claiming “never-say-never” to inspire some individuals to latch on to a promissory future featuring a techno-science fix for human mortality. </p>
<p>The existential tussle with human mortality has been a feature of culture for as long as thoughts have been recordable in art or the written word. People turned to religion in the hope of resurrection and immortality in the same way that some are now turning to science. When the Roman philosopher Epicurus <a href="https://archive.org/stream/EpicurusTheExtantRemainsBaileyOxford1926OptimizedForGreekOnLeft/Epicurus-the-Extant-Remains-Bailey-Oxford-1926%20Optimized%20for%20Greek%20on%20Left_djvu.txt">tried to persuade us that</a> “death should be nothing to us” he failed to assuage the deep human anxiety in the face of mortality.</p>
<h2>Frozen futures</h2>
<p>So, given that it is so natural for humans to seek immortality, is cryopreservation, purchased by well-informed individuals who have the personal wealth to afford it, really wrong? Looked at from this perspective one could say that it is merely an expression of a libertarian freedom which tolerates the spending of personal resources on wasteful luxuries – although many might regard this as inherently unfair and claim that access to these services should be made more equitable, perhaps even provided as part of routine healthcare. </p>
<p>The problem with the current debate is that advocates of cryonics combine science fiction with science fact which, for some, amounts to a persuasive hype. But for such claims to be sustained, there needs to be much stronger evidence that restoration following cryogenics was more than a fantasy. </p>
<p>And there are even more profound issues than this. Cryonics, after all, has the potential to be deeply exploitative of those at an especially vulnerable time in their lives, in particular those facing the premature death of a young family member. Although companies offering the service are at one level candid about the procedure, <a href="http://www.alcor.org/">they also subtly promise more</a>. The language used in their advertising is that of medical care, the deceased is referred to as a “patient” and the procedure described as a boundary-breaking treatment extending into the future. This certainly has the potential to offer false hope. </p>
<p>The legal status of such organisations is untested in the UK, but it is unlikely that they would conform <a href="http://www.legislation.gov.uk/ukpga/2004/30/contents">to the requirements</a> of the Human Tissue Act 2004. More specific regulation may force such organisations to be more candid in their literature and less likely to prey on the vulnerable. </p>
<p>There is also the question about resources. Isn’t it a form of hubris to say to future generations that “you should devote your resources to saving and restoring me”. What reason would future generations have for treating me as a patient rather than a curiosity – a strange ice-mummy from the 21st century? What’s more, the world’s population is expanding rapidly. Sending our dead into the future would only add to that. So, if this technique were to ever work, perhaps a condition of future resurrection should be an agreement not to reproduce during one’s current lifetime as a trade-off against a growing population.</p>
<p>If it could work then cryogenics might be construed as a caring option particularly in the light of a dying child’s plea. However, what form of care would it be to send a child, alone, into some indeterminate future – no family, no friends, no resources? It is in circumstances like these that <a href="https://www.poets.org/poetsorg/poem/do-not-go-gentle-good-night">the words of Dylan Thomas</a> are often quoted as a defiant response to death: “Do not go gentle into that good night.” But on reflection, cryogenics is a misguided way to “rage against the dying of the light”.</p><img src="https://counter.theconversation.com/content/69064/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Simon Woods 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>It’s uncertain whether we’ll ever be able to bring cryogenically frozen people back to life. Should we even try?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/78152012-07-03T04:45:42Z2012-07-03T04:45:42ZForce-feeding anorexic patient curbs freedom of choice<figure><img src="https://images.theconversation.com/files/12545/original/8b4pchmr-1341282615.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">An English court has ordered that a young anorexic woman be force fed.</span> <span class="attribution"><span class="source">DoD /Wikimedia Commons</span></span></figcaption></figure><p>Force-feeding or starving to death? Emotive terms for an appalling choice. But this choice – whether to restrain and force-feed a young woman against her will or let her die of starvation – was <a href="http://www.guardian.co.uk/society/2012/jun/15/anorexic-woman-fed-judge">recently considered</a> by an English court. </p>
<p>The term force-feeding has a lot of baggage, especially in England, where hunger-striking suffragettes were force-fed (in a brutal and punitive manner, according to contemporary accounts) as were, more recently, imprisoned IRA hunger strikers. </p>
<p>Voluntarily starving to death has links with the rational suicide debate, and attracts largely disapproving attention from ethical, legal and religious sources. The court was between a rock and a hard place indeed.</p>
<h2>The case</h2>
<p>In brief, the facts of the recent case are:</p>
<ul>
<li><p>“E” is a 32-year-old woman who has refused food to a point where she is clearly dying. Indeed, she has been admitted to a community hospital as a palliative patient.</p></li>
<li><p>E has indicated, in writing and repeatedly, that she does not want to be kept alive by attempts to feed her, or to be resuscitated in the event of cardiac arrest.</p></li>
<li><p>Her parents had reluctantly accepted this, given that E had suffered from anorexia nervosa for decades, and the prognosis for recovery was grim.</p></li>
<li><p>The local authority wanted to know if E should be protected from this fate, and took the matter to court.</p></li>
<li><p>E, while described as “intelligent”, “articulate” and even “charming” is deeply troubled, abusing alcohol and opiates, and suffering from a personality disorder.</p></li>
</ul>
<figure class="align-right ">
<img alt="" src="https://images.theconversation.com/files/12531/original/c7p3ktts-1341212640.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=237&fit=clip" srcset="https://images.theconversation.com/files/12531/original/c7p3ktts-1341212640.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=874&fit=crop&dpr=1 600w, https://images.theconversation.com/files/12531/original/c7p3ktts-1341212640.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=874&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/12531/original/c7p3ktts-1341212640.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=874&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/12531/original/c7p3ktts-1341212640.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=1098&fit=crop&dpr=1 754w, https://images.theconversation.com/files/12531/original/c7p3ktts-1341212640.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=1098&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/12531/original/c7p3ktts-1341212640.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=1098&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">A suffragette on hunger strike being forcibly fed with a nasal tube (1911).</span>
<span class="attribution"><span class="source">Wikimedia Commons</span></span>
</figcaption>
</figure>
<p>The judge ruled that E should be restrained, physically or chemically, for a year and force-fed, recognizing that it would cost over half a million dollars to achieve this – and that it was likely that she would not change her view. </p>
<p>He declared that all E’s stated wishes, despite their consistency over time, were not valid as she lacked the capacity to make decisions about her care and lifestyle. The main cause of this lack of capacity was her weight loss and low BMI – based on the idea that a BMI of 17 is needed to ensure that E has an adequately functioning brain. E’s BMI is currently around 11.</p>
<h2>Autonomy, capacity and volition</h2>
<p>Decision-making capacity is the cornerstone of autonomy – all accounts of autonomy from JS Mill onwards acknowledge this. The bigger the decision (that is, the graver its consequences), the more capacity is required. Mill famously offered no suggestions as to what capacity is, or how to test it, so this task has fallen to others, and many have taken on the challenge.</p>
<p>Put most simply, capacity requires the ability to value and the ability to act. By “act” we would normally mean to communicate a choice. “To value” is more complex: it is a composite of understanding, appreciating, reasoning and having a set of values and goals as a reference point. </p>
<p>In Australia, these goals and values can be irrational – it’s not necessary for others to be able to agree with, or even understand these values for the person to be considered competent (to possess adequate decision-making capacity).</p>
<figure class="align-left ">
<img alt="" src="https://images.theconversation.com/files/12532/original/jsrtxprr-1341212827.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=237&fit=clip" srcset="https://images.theconversation.com/files/12532/original/jsrtxprr-1341212827.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=881&fit=crop&dpr=1 600w, https://images.theconversation.com/files/12532/original/jsrtxprr-1341212827.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=881&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/12532/original/jsrtxprr-1341212827.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=881&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/12532/original/jsrtxprr-1341212827.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=1107&fit=crop&dpr=1 754w, https://images.theconversation.com/files/12532/original/jsrtxprr-1341212827.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=1107&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/12532/original/jsrtxprr-1341212827.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=754&h=1107&fit=crop&dpr=3 2262w" sizes="(min-width: 1466px) 754px, (max-width: 599px) 100vw, (min-width: 600px) 600px, 237px">
<figcaption>
<span class="caption">A caricature of John Stuart Mill on the cover of Vanity Fair (1873).</span>
<span class="attribution"><span class="source">Leslie Ward via Wikimedia Commons</span></span>
</figcaption>
</figure>
<p>In this case, the judge didn’t explicitly state which of the elements of capacity E lacks, and has lacked for some years. She can communicate, and her intelligence is favourably commented on – E having been for several years a medical student. Her written and verbal comments make it clear that she can appreciate her situation, and is aware of the consequences of her actions. </p>
<p>The failure must then lie in her reasoning, influenced by the detrimental cerebral effects of severe malnutrition and the widely-held view that sufferers from anorexia have a distorted body image that renders them incapable of a reasoned approach to their own care.</p>
<h2>The bigger dilemma</h2>
<p>The problem is this: what if E is subjected to the course of treatment mandated by the court (however impractical that seems), regains weight to the target BMI of 17, writes the same advance directive and stops eating again? Do we wait for her BMI to fall below 11, then pronounce her incompetent and start again?</p>
<p>Would it not be better to acknowledge that the real problem here is E’s values – she values not eating above all else, including her own life. This is a value system that most of us find not only baffling but also deeply hurtful and offensive. </p>
<p>To wish to die of starvation in a society of plenty is uncanny, unsettling and scary. E may well have the capacity to decide, as many experts testified, but the court found her decision unacceptable. While this is a parentalistic attitude that most clinicians would find abhorrent, there’s a long-standing jurisdiction (parens patriae) that allows courts in England and Australia to make such a judgement.</p>
<p>Unsurprisingly, the judgement has proved deeply divisive. I personally find it worrying for this reason: what is to stop courts from using their jurisdiction to curtail our freedom to make bad decisions? Our dignity as humans resides in our ability to make our own decisions – good or bad.</p><img src="https://counter.theconversation.com/content/7815/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Peter Saul 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>Force-feeding or starving to death? Emotive terms for an appalling choice. But this choice – whether to restrain and force-feed a young woman against her will or let her die of starvation – was recently…Peter Saul, Senior Specialist in Intensive Care and Head of Clinical Unit in Ethics and Health Law, University of NewcastleLicensed as Creative Commons – attribution, no derivatives.