tag:theconversation.com,2011:/us/topics/organ-register-6524/articlesOrgan register – The Conversation2018-06-01T10:43:55Ztag:theconversation.com,2011:article/969372018-06-01T10:43:55Z2018-06-01T10:43:55ZOrgan transplants: knowing more about where donors live could save lives<figure><img src="https://images.theconversation.com/files/221033/original/file-20180530-120511-1k4r38q.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/model-human-anatomy-611767448">Panint Jhonlerkieat/Shutterstock</a></span></figcaption></figure><p>In 2017-18, a record number of people (1,575 in total) in the UK donated their organs after death, resulting in more than 5,000 life-saving or life-improving transplants. These figures, released by <a href="https://nhsbtdbe.blob.core.windows.net/umbraco-assets/1616/united_kingdom.pdf">NHS Blood and Transplant</a>, show numbers of deceased donors continue to rise in the UK. The 2017-18 figure was an <a href="https://www.organdonation.nhs.uk/news-and-campaigns/news/record-number-of-organ-donors-and-highest-increase-in-28-years/">11% increase</a> on the previous year, and a near 20% increase in donor numbers since 2013-14.</p>
<p>These numbers are encouraging. More than <a href="https://www.organdonation.nhs.uk/news-and-campaigns/news/more-than-50-000-people-now-alive-thanks-to-organ-donation-and-transplant/">50,000 people</a> are alive in the UK today following organ transplant. Yet <a href="https://nhsbtdbe.blob.core.windows.net/umbraco-assets-corp/4492/section_1_summary_of_transplant_activity.pdf">457 people still died</a> in 2016-17 waiting for a transplant and more than <a href="https://nhsbtdbe.blob.core.windows.net/umbraco-assets/1616/united_kingdom.pdf">6,000 patients</a> remain on the transplant waiting list.</p>
<p>England, Scotland and Northern Ireland operate an opt-in system of consent for organ donation. Willing donors provide consent by actively signing up to the organ donor register. Wales, however, has had an <a href="https://www.bma.org.uk/collective-voice/policy-and-research/ethics/organ-donation/wales">opt-out system</a> since December 2015 (which <a href="https://www.gov.uk/government/news/government-announces-consultation-on-organ-donation-opt-out-system">England</a> and <a href="https://www.organdonationscotland.org/news-events/increasing-organ-and-tissue-donation">Scotland</a> are also expected to implement). All adults in Wales are now presumed to be consenting organ donors unless they explicitly register to opt out of donation, although people can still choose to opt in (known as <a href="https://www.bma.org.uk/collective-voice/policy-and-research/ethics/organ-donation/wales">express consent</a>). </p>
<p>Even given these policy differences, family refusal remains one of the biggest barriers to donation. Under each country’s laws, following the death of a loved one, consent must first be obtained from the family before any organ can be taken for transplant (even in Wales), regardless of the wishes of the deceased. While consent is granted in around two-thirds of cases, this <a href="https://nhsbtdbe.blob.core.windows.net/umbraco-assets-corp/4660/section_13_national_potential_audit_donors.pdf">rises to over 90%</a> when the deceased was a registered donor.</p>
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<img alt="" src="https://images.theconversation.com/files/221040/original/file-20180530-120493-1fxtcz2.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=237&fit=clip" srcset="https://images.theconversation.com/files/221040/original/file-20180530-120493-1fxtcz2.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=600&h=400&fit=crop&dpr=1 600w, https://images.theconversation.com/files/221040/original/file-20180530-120493-1fxtcz2.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=600&h=400&fit=crop&dpr=2 1200w, https://images.theconversation.com/files/221040/original/file-20180530-120493-1fxtcz2.jpg?ixlib=rb-1.1.0&q=15&auto=format&w=600&h=400&fit=crop&dpr=3 1800w, https://images.theconversation.com/files/221040/original/file-20180530-120493-1fxtcz2.jpg?ixlib=rb-1.1.0&q=45&auto=format&w=754&h=503&fit=crop&dpr=1 754w, https://images.theconversation.com/files/221040/original/file-20180530-120493-1fxtcz2.jpg?ixlib=rb-1.1.0&q=30&auto=format&w=754&h=503&fit=crop&dpr=2 1508w, https://images.theconversation.com/files/221040/original/file-20180530-120493-1fxtcz2.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">Making a difficult decision.</span>
<span class="attribution"><a class="source" href="https://www.shutterstock.com/image-photo/doctor-consoling-upset-woman-381286084?src=4MSMWJNDJFL5XFOe-zDo6Q-1-27">XiXinXing/Shutterstock</a></span>
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<h2>Donation and location</h2>
<p>At the time of writing, <a href="https://nhsbtdbe.blob.core.windows.net/umbraco-assets/1616/united_kingdom.pdf">more than one-third</a> of the UK’s population (24.9m people) have signed up to the NHS organ donor register, making clear their willingness to donate their organs after death. But <a href="https://nhsbtdbe.blob.core.windows.net/umbraco-assets-corp/4502/section_12_nhs_organ_donor_register.pdf">recent figures</a> show that levels of registration differ across areas of the UK. The number of registered donors is lower in England (35% of the population) than Wales (38%), Northern Ireland (40%) and Scotland (44%). </p>
<p>Between health authorities in England, higher numbers of donors are found in the South (42%), compared to the North (34%), Midlands and East (34%) and London (29%). Similar disparities also exist among <a href="https://nhsbtdbe.blob.core.windows.net/umbraco-assets/1761/wales_la_level.pdf">Welsh local authorities</a>. Whether these figures point to a geography of potential donors is currently unclear, but these numbers surely warrant further investigation – especially given the strong relationship between registered donor status and familial consent for donation.</p>
<p>Research from the US has already identified local differences that correspond to different levels of registered organ donors. <a href="http://journals.sagepub.com/doi/full/10.1177/1526924816640670">In one study</a>, areas characterised by higher income were found to have greater numbers of registered donors, for example. Until recently, however, research linking location factors with organ donation rates had not been conducted in the UK. </p>
<p>In our <a href="https://www.sciencedirect.com/science/article/pii/S1353829218300388">recently published analysis</a> of local patterns in registered organ donors, we found notable difference in rates of sign-up to the organ donor register across Welsh communities in the five years before Wales switched to an opt-out system. Among those aged 16-70, we found levels of new sign-up over this period ranged from as little as 6% of residents in some communities to as much as 24% in others. Higher rates of new sign-up during this period were generally found in and around major urban areas in the south east and north east of Wales, while lower rates were shown in south Wales valley communities.</p>
<p>Exploring the local geography of registered donors will undoubtedly raise questions about whether these differences are caused by variations in people or place – and rightly so. But having a better understanding of the potential geography of registered donors could be of considerable benefit to all the UK nations – especially to those local policymakers and practitioners working within them. </p>
<p>For now, rates of organ donation in the UK are still someway behind high performing countries such as Spain, which had <a href="http://www.irodat.org/?p=database&c=ES#data">46.9 donors per million</a> people in 2017, compared to <a href="http://www.irodat.org/?p=database&c=GB#data">23 donors per million</a> in the UK. Figures for 2017-18 also show the number of people registering a decision to opt-out of organ donation in the UK has increased to more than <a href="https://nhsbtdbe.blob.core.windows.net/umbraco-assets/1616/united_kingdom.pdf">500,000</a>. </p>
<p>Tracking local trends can provide important information that will help identify areas where fewer people are opting in to organ donation, or, in the future (or now in Wales), areas where more people are opting out. Information that could play a vital role in helping specific groups and communities learn about the importance of organ donation, and ultimately help save lives.</p><img src="https://counter.theconversation.com/content/96937/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Nicholas Page 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>To encourage more people to donate, we need to figure out how location has affected their decision.Nicholas Page, Senior Research Assistant, WISERD, University of South WalesLicensed as Creative Commons – attribution, no derivatives.tag:theconversation.com,2011:article/160992013-09-05T05:40:54Z2013-09-05T05:40:54ZJumping the organ queue questions some core principles<figure><img src="https://images.theconversation.com/files/28076/original/czbjcmmt-1374745868.jpg?ixlib=rb-1.1.0&rect=7%2C0%2C4783%2C2961&q=45&auto=format&w=496&fit=clip" /><figcaption><span class="caption">We love the NHS but maybe we love life more.</span> <span class="attribution"><span class="source">PA/Dave Thompson</span></span></figcaption></figure><p>Giving priority for transplants to people who have joined the organ donor register (ODR) isn’t a new idea and is already happening in countries such as Israel and Singapore. </p>
<p>In Israel, where a points-based system <a href="http://news.bbc.co.uk/1/hi/8416443.stm">was implemented in 2009</a>, there has been <a href="http://onlinelibrary.wiley.com/doi/10.1111/ajt.12240/full">an increase in the number</a> of organ donors. Only one in ten adults in Israel carried a donor card (compared to one in four in the UK) four years ago. This is now closer to <a href="http://onlinelibrary.wiley.com/doi/10.1111/ajt.12001/pdf">one in eight</a>. </p>
<p>Despite this success, some people have been reluctant to see this happen in the UK. Given the shortage of donated organs in the UK, it’s easy to think that anything that can increase donation rates is a good thing.</p>
<p>But when it comes to organ donation, any new approach must be ethically acceptable; for example, taking organs without consent would increase the number of organs available, but most people would still regard this as unacceptable.</p>
<p>Because there is currently no reward for joining the register, organ donation is viewed as a selfless and “altruistic” act. Altruism is a complex concept, but generally an action can be described as altruistic if it is motivated by a desire to help another person. This is why phrases such as “the gift of life” are ingrained in organ donation.</p>
<p>While selflessly helping other people is often a good thing, some people are less inclined to do this than others. We all know people who give money to charity, but equally we know people who don’t entertain the thought. So relying solely on people’s altruistic nature to generate organ donors is unlikely to work for everyone and unrealistic. In the UK it has prompted <a href="http://www.organdonation.nhs.uk/">less than a third</a> of the population to sign up.</p>
<h2>A selfless and self-interested act</h2>
<p><a href="http://www.telegraph.co.uk/health/healthnews/10172247/Registered-organ-donors-could-be-given-priority-for-transplants.html">Giving priority to registered donors</a> may have a greater impact: it appeals not only to people’s selfless desires to help others, but also to their self-interested desire to help themselves.</p>
<p>A donor priority system may bring about more donations, and it also discourages free-riding. Free-riding is essentially taking from a system without being prepared to contribute, and this happens frequently under the current system. </p>
<p>Currently, most people would be willing to accept a transplant, but a relatively small proportion have joined the register. Having a donor priority system means that those prepared to contribute to the transplantation system are most likely to receive its benefits, which seems intuitively fair.</p>
<h2>Each according to need</h2>
<p>Despite the possible advantages of a donor priority system, there are also problems. The first, and perhaps most difficult, is that the NHS is built on principles of treating each patient according to need. </p>
<p>If you treat a patient according to their past behaviour (which is what allocating organs according to ODR status would do), then you may need to be prepared to do this consistently. Should people who pay more tax receive priority for treatment, or should people be refused treatment if they have contributed to their own illness? </p>
<p>These are tough questions, but many people think that a virtue of the NHS is that it treats each person as fundamentally equal, and does not discriminate on the basis of past behaviour.</p>
<h2>Family will have to be overruled</h2>
<p>Another barrier is the family veto. If I’m registered as an organ donor and I die, my next-of-kin can generally ignore my wishes and refuse to donate my organs. This is justified by a simple assumption that I would not want to go ahead with donation if I knew that it would cause distress to my next-of-kin. </p>
<p>There have been suggestions to take a firmer stance; donors’ wishes are <a href="http://www.guardian.co.uk/society/2013/apr/11/organ-donation-drive-prevent-overriding">overridden in 45% of cases</a>.</p>
<p>The family veto has recently faced criticism, but it would almost certainly have to be changed for donor priority to work effectively. I might be personally opposed to organ donation, but very keen to receive priority for a transplant, so I might join the ODR safe in the knowledge that my parents will refuse consent for donation if the time comes.</p>
<p>It is also not easy to say why only donating organs should qualify a person for priority. For example, who contributes the most to transplantation? a) someone who joins the register; b) a transplant surgeon; c) a volunteer who helps alcoholics to stop drinking. The surgeon directly saves the most lives, but the volunteer may help alcoholics stop drinking before they need a liver transplant which reduces strain on the transplantation system. </p>
<p>In comparison, and bearing in mind that <a href="http://www.nhs.uk/Conditions/Organ-donation/Pages/Introduction.aspx">most people do not die in a way that allows their organs to be donated</a>, the person who joined the ODR will probably contribute the least. </p>
<p>A donor priority system may be a neat solution to the organ shortage, but it raises complex issues. These may be resolvable, but we need to ask ourselves whether we are willing to give up some existing principles in order to potentially save more lives.</p><img src="https://counter.theconversation.com/content/16099/count.gif" alt="The Conversation" width="1" height="1" />
<p class="fine-print"><em><span>Greg Moorlock receives funding from University Hospital Birmingham Charities.</span></em></p>Giving priority for transplants to people who have joined the organ donor register (ODR) isn’t a new idea and is already happening in countries such as Israel and Singapore. In Israel, where a points-based…Greg Moorlock, Research Fellow, University of BirminghamLicensed as Creative Commons – attribution, no derivatives.