Organ donation ethics and law Y5 UCL Medical School 2013
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Lecture delivered in first week of Year 5 UCL Medical School. Lots of discussion and debate, particularly about the arguments for and against an opt-out system. Engaged students make teaching really fun.
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Organ donation ethics and law Y5 UCL Medical School 2013
- 1. Year 5 Ethics and Law 2013
- 2. Objectives By the end of this lecture you will be able to: • define the main features of the Human Tissue Act 2004 • give two examples of when consent is required for organ/tissue use • give one example of when consent is not required for organ/tissue use • list the different factors that could be taken into account to decide how organs are distributed, and specify which are used in the UK • list strategies for increasing organ donation and specify which are in use in the UK • give one argument for and one argument against an opt-out system of donation
- 3. Agree or disagree 1. Someone who has received 1 organ transplant should not be able to have another 2. Someone whose lifestyle (smoking, drinking, alcohol, obesity) has caused their organ failure should not get a transplant 3. If someone is on the donor register their organs should be taken for transplantation even if their family object 4. A person who has young children should be given a transplant before a single person 5. Someone in financial difficulty should be able to sell an organ such as a kidney 6. Prisoners with life sentences should not be given organ transplants
- 4. Facts and figures: beliefs vs actions
- 5. Facts and figures: beliefs vs actions
- 6. Facts and figures: beliefs vs actions
- 7. These developments are all very recent. It is a challenge to ensure our ethics and laws keep up with scientific advances
- 8. UK Law (old laws) • The Human Tissue Act 1961 • The Anatomy Act 1984 • The Human Organ Transplants Act 1989
- 9. 1. Learning from Bristol: The Report into Children's Heart Surgery at Bristol Royal Infirmary (July 2001) 2. The Royal Liverpool Children's Hospital Inquiry Report (January 2001) HC12-II 3. Dept of Health (May 2003) The Investigation of Events that followed the death of Cyril Mark Isaacs; Dept of Health (July 2003) Isaacs Report Response “Storage and use of organs after people died without proper consent was commonplace”
- 10. UK Law: The Human Tissue Act 2004
- 11. Key points: Human Tissue Act 2004 • Regulates the removal, storage and use of human tissue • Created the Human Tissue Authority • Makes it lawful to take minimum steps to preserve the organs of a deceased person for use in transplantation while steps are being taken to determine the wishes of the deceased • Creates a new offence of “DNA theft”
- 12. Consent is the fundamental principle underpinning the lawful retention of body parts, organs and tissues, from the living or deceased, for specified health purposes or public display
- 13. Can anyone think of any possible exceptions to consent?
- 14. Exceptions to consent • Some research on anonymised cell samples – strict rules and regulations • Unable to trace the donor but wish to use sample to obtain medical/genetic information – must apply to the Human Tissue Authority • Adults lacking capacity – best interests decision • Extreme public health emergency – Secretary of State has power
- 15. Living adult • His/her consent Deceased adult • His/her consent before death • If no prior consent, consent of a nominated representative • If no representative, consent of a qualifying relative1. Spouse/partner 2. Parent/child 3. Brother/sister/other relatives 4. Friend of longstanding Who can consent?
- 17. How can we distribute organs fairly? • To each person an equal share • To each person according to need • To each person according to effort • To each person according to contribution • To each person according to free market exchange
- 18. UK Law • Equal access: free of bias based on race, sex, income level • Free from medical or social ‘worthiness’ • Maximum benefit • Medical need
- 19. How can we increase the pool of donors ethically? http://www.guardian.co.uk/media/video/2009/oct/30/organ-donation-tv-ad
- 20. How can we increase the pool of donors ethically? • Education/nudge* • Mandated choice • Alternative sources • Using ‘high-risk’ donors • Opt-out system (presumed consent) • Financial incentives • Social incentives • Increasing living donors*
- 21. Germany: Opt-in 12% consent rate Austria: Opt-out 99% consent rate
- 22. What are the arguments for and against opt-out?
- 23. What are the arguments for and against opt-out? For • It would increase the pool of donors • Strong utilitarian arguments to save lives • Takes pressure off families • Increases autonomy of donor • Same choice, just changes default position • Actually fulfills many people’s wishes Against • Reduces autonomy if don’t actively opt-out • Vulnerable people would not opt-out • Changes nature of ‘gift’ of organ donation • May induce backlash and reduce donations • Mixed evidence about whether it would increase pool
- 24. Organ trade Illegal organ trade: India, China, Africa, Egypt, USA and others Legal organ trade: Iran (since 1998)
- 25. Goyal M, Mehta RL, Schneiderman LJ, et.al. Economic and health consequences of selling a kidney in India. JAMA, 2002; 288(13):1589-1593.
- 26. Organ trade/trafficking is ILLEGAL in the UK
- 29. How can we increase the pool of donors ethically? • Education/nudge* • Mandated choice • Alternative sources • Using ‘high-risk’ donors • Opt-out system (presumed consent) • Financial incentives • Social incentives • Increasing living donors*
- 30. What might people ask you as a doctor?
- 31. Questions from donors “I’m not sure if my religion allows donation”
- 32. Questions from donors “I’m not sure if my religion allows donation” No major UK religions are opposed to organ donation
- 33. Questions from donors “What will happen if I’m on the register but my relatives object”
- 34. Questions from donors “They will be encouraged to accept your wishes. ” “What will happen if I’m on the register but my relatives object”
- 35. Questions from donors “Can I be sure that doctors will fight as hard to save me if I’m on the register?”
- 36. Questions from donors “Yes, we have a duty of care to save life first. If, despite our best efforts, a patient dies organ and tissue donation can be considered. A completely different team of donation and transplant specialists would then be called in.” “Can I be sure that doctors will fight as hard to save me if I’m on the register?”
- 37. Questions from relatives “Will my relatives’ body be disfigured? Can I see them after?”
- 38. Questions from relatives “Organs and tissue are always removed with the greatest care and respect. This takes place in a normal operating theatre by specialist surgeons. Afterwards the surgical incision is closed and a dressing applied in the normal way. You can of course spend time with your relative after the organ removal. ” “Will my relatives’ body be disfigured? Can I see them after?”
- 39. Questions from relatives “How do you know he’s really dead? He’s still breathing.”
- 40. Questions from relatives “Death is confirmed in exactly the same way for people who donate organs and those that do not. For those on ventilators brain stem tests are done. There are strict protocols for these tests and they are performed by two very experienced doctors.” “How do you know he’s really dead? He’s still breathing.”
- 41. Questions from relatives “Can we decide who gets my relatives organs? I don’t want a criminal to have them.”
- 42. Questions from relatives “No. All organs donated in the UK by people who have died are donated freely, voluntarily and unconditionally. They are allocated on the basis of need and best match.” “Can we decide who gets my relatives organs? I don’t want a criminal to have them.”
- 43. Questions from recipients “Can I contact the family of the donor to thank them?”
- 44. Questions from recipients “No. This is not permitted in the UK, but thanks can be passed on by a SNOD.” “Can I contact the family of the donor to thank them?”
- 45. Questions from recipients “Can I pay someone to donate an organ to me?”
- 46. Questions from recipients “No. It is absolutely illegal to trade organs in the UK.” “Can I pay someone to donate an organ to me?”
- 47. Agree or disagree 1. Someone who has received 1 organ transplant should not be able to have another 2. Someone whose lifestyle (smoking, drinking, alcohol, obesity) has caused their organ failure should not get a transplant 3. If someone is on the donor register their organs should be taken for transplantation even if their family object 4. A person who has young children should be given a transplant before a single person 5. Someone in financial difficulty should be able to sell an organ such as a kidney 6. Prisoners with life sentences should not be given organ transplants
- 48. Objectives By the end of this lecture you will be able to: • define the main features of the Human Tissue Act 2004 • give two examples of when consent is required for organ/tissue use • give one example of when consent is not required for organ/tissue use • list the different factors that could be taken into account to decide how organs are distributed, and specify which are used in the UK • list strategies for increasing organ donation and specify which are in use in the UK • give one argument for and one argument against an opt-out system of donation
- 49. For more on the ethics and law of organ donation: http://www.scoop.it/t/ethics-and-law-of-organ-donation
- 50. References • Learning from Bristol: The Report into Children's Heart Surgery at Bristol Royal Infirmary (July 2001) • The Royal Liverpool Children's Hospital Inquiry Report (January 2001) HC12-II • Dept of Health (May 2003) The Investigation of Events that followed the death of Cyril Mark Isaacs; Dept of Health (July 2003) Isaacs Report Response • Goyal M, Mehta RL, Schneiderman LJ, et.al. Economic and health consequences of selling a kidney in India. JAMA, 2002; 288(13):1589-1593
Editor's Notes
- Here are some statements about organ donation. Do you agree or diagree with them? What does UK law say about them? Discuss in pairs. We will cover these issues as we go through the session and come back to them at the end so note down what your thoughts are.
- Taken from: http://www.organdonation.nhs.uk/campaigns/campaign-materials.asp
- 3 people a day die waiting for an organ.
- Conclusion: there are not enough organs for people who need them. Many more people would take an organ than are on the register to give one.
- 1905 - first reported cornea transplant1908 - blood transfusion established1954 - first successful kidney transplantation. Identical brothers. Worked for 8 yrs1962 - first cadaveric kidney transplant. Worked for 2 yrs1966 - first successful liver transplant. Worked for >1 yr1967 - first successful heart transplant. Worked for 2.5 wks1968 - first successful UK heart transplant1981 - first successful heart-lung transplant. Worked for 5yrs1981 - UK Donor card introduced (previously it only covered kidneys)1989 - first successful living-related liver transplant1996 - first split liver transplant (1 cadaveric liver, multiple recipients)2004 - Human Tissue Act 2005 – first successful partial face transplant (France, 2005)2007 - first UK altruistic non-directed kidney transplant2010 – first successful full face transplant (Spain 2010)
- Bristol Royal Infirmary: In the mid 90s high death rates at the Bristol children’s cardiothoracic unit led to an enquiry and two surgeons were struck off the medical register by the GMC. As part of the enquiry that followed it emerged in 1999 that BRI kept the hearts and other organs of more than 170 babies who died after operations. The Trust said it was standard procedure.Alder Hey Children’s Hospital: The Alder Hey enquiry was sparked by the death of 11 month old Samanatha Rickard who died in 1992 whilst undergoing open heart surgery at BRI. When the allegations of excess mortality at BRI hit the news, Samantha’s mother Helen requested a copy of her deceased child’s medical records and discovered a letter from the pathologist who performed the post-mortem which stated that Samantha’s heart had been retained. Helen then founded a support group for other families and pressed for further investigation of all children’s heart surgery. During the Public enquiry that followed attention was drawn to Alder Hey Hospital in Liverpool and it was discovered that the pathologist r Dick Van Velzen had systematically ordered the retention of vast numbers of children’s organs at post mortem. Isaacs report (2003): Department of Health enquiry following scandals found that there was widespread retention of organs and tissues without proper consent. “isaacs” refers to Mr Isaacs whose brain was retained at Manchester mortuary. His was one of 225 brains that were retained for research without the knowledge of his relatives. Before the postmortem Mrs Isaacs had emphasised the family’s religious objections to a postmortem. She was very upset when it was discovered his brain was retained years later. The Report investigated events that mainly took place between 1985 and 1995. Over this period public and professional attitudes changed but practice did not keep up. Those involved in organ and tissue retention following post mortems did not consider their actions were unethical or illegal. There was a widespread belief that organ and tissue retention was “in the public interest” and that retention was lawful as the postmortem was carried out for the Coroner. It was felt by many that it would be unnecessarily distressing to discuss specifics of postmortems with recently bereaved people. Consent was therefore not sought. This is no longer an acceptable defense.
- The Human Tissue Act 2004 replaced previous legislation. Applies to England, Wales and Northern Ireland. Separate legislation for Scotland very similar: The Human Tissue Act (Scotland) 2006.
- Human tissue is defined as material that has come from a human body and consists of, or includes, human cells DNA theft: it is unlawful to have human tissue with the intention of its DNA being analysed, without the consent of the person from whom the tissue came Offences under the Human Tissue Act 2004:Removing, storing or using human tissue for ‘Scheduled Purposes’ without appropriate consent Storing or using human tissue donated for a Scheduled Purpose for any other purposeTrafficking in human tissue for transplantation purposesCarrrying out licensable activities without holding a licence from the Human Tissue AuthorityHaving human tissue including hair, nail, and gametes with the intention of its DNA being analysed without the consent of the person from whom the tissue came. (medical diagnosis and treatment and criminal investigation are excluded)
- Penalties of up to 3 years in prison or a fine or both are provided in the Act as a deterrent to failing to obtain or to misusing consent Purposes that the Act covers are diverse. Images are here to represent forensic pathology/postmortems (Silent witness TV show), public display including specimens in museums (Grant Museum, UCL), and newer exhibitions such as BodyWorks, and of course research.
- Ask the audience
- As we saw in the statistics at the start of the lecture there are not enough organs to go round. There are 7500 people in the UK waiting for an organ and 1000 people a year die waiting. So what can we do about it?
- This concept is distributive justice and concerns the nature of a socially just allocation of goods in a society. We can try to take a step back and think about organs in the same way as any scarce resource. From a theoretical perspective there are different ways to distribute a scarce resource. Think about how these could apply to organ donation. Which seem fair? Which seem unfair? Why? Dependant on time ask the audience to contribute. Equal share: thinking back to our questions at the start, what happens if someone has already had 1 organ transplant, should they get another or should someone else on the list be prioritized? According to need: what does need really mean? How can we judge who needs a transplant more? Who decides? Unless there is an immediate threat to life (egparacetamol overdose and fulminant liver failure) it is often more difficult that it seems at first to decide who is more in need. According to effort: should those who have put more effort in to make themselves healthy get an organ? Should non-smokers get organs preferentially over smokers? Should those who have managed to lose weight be given an organ in favour of a person who remains obese? According to contribution: should the degree to which someone has contributed to society have an impact? Should someone living on benefits get an organ? Should a banker who has engaged in tax avoidance get an organ? Should a researcher who has contributed to reducing mortality from lung cancer get an organ in favour of the person who cleans the lab they work in? Should prisoners on life sentences get an organ? According to free market exchange: should we allow a free trade of organs? We will come back to this question Some people argue that distribution is biased against worthy individuals when individual worthiness factors are not included. People who engage in poor lifestyle choices are behaving irresponsibly and could have prevented their illness and are, in essence, increasing the need for organs and depriving people who, “have no control over their need,” of necessary treatment.None of these systems are perfect or easy in practice. In reality we might consider multiple factors.
- Not truly equal access in fact – there is a smaller pool of organs from black and ethnic minority populations, therefore patients from BME backgrounds are less likely to be able to find a good match and therefore are disadvantaged. Also, the geographical distance between the donor and recipient is a factor, so this is not true equal access (ie if you live in the outer Hebrides you are at a disadvantage)With regard to medical ‘worthiness’ – this is not taken into account in terms of judging the recipient. But the likely success of the transplant is taken into consideration. That is why those with alcohol dependency must not be drinking to receive an organ. Maximum benefit criteria may be medical need (ie sickest get organ first) or probable success (those who are likely to live the longest get organ). Successful transplants are usually measured by number of life years gained. Arguments against this:predicting medical success is difficult - is additional life years the right measure of success? Life of patient or life of transplant? Should we use QALYs (quality-adjusted life years) instead? possibly open to bias, favouritism, unfair practices as too subjectiveusing age devalues the remaining life of an older person In the UK the system is determined by medical profession, Department of Health and specialist advisory groups. The blood group, age and size of donor and recipient are taken into consideration to ensure the best possible match. Tissue typing (HLA matching and other antigens) is also a factor for some transplants. A computer takes into account numerous factors and generates a list of matches. The process is co-ordinated by NHSBT.The allocation system is different according to the type of organ. Patients waiting for a heart or liver transplant classed as urgent are prioritised as they will die within days without a transplant. Otherwise the duration of time on the transplant list is an important factor The location of donor and recipient is considered to minimise the delay between retrieval and transplantation. There are ethical problems inherent in defining the criteria for organ distribution, and in weighting the criteria appropriately. Different countries take different approaches.
- This is an example of an education/nudge campaign. You may have seen it. Did it have any effect on you? There are 3 sources of organs: Living peopleDeceased peopleAlternative sources (include animals and artificial/bionic futuristic options)
- We have already seen one example of an education/nudge campaign. Other examples include facebook campaigns, and options for signing up as a donor on driving licences and Boots cards. The options with * are used in the UK. The others are not. We will come back to some of these options as we move on. Mandated choice: Illinois requires driver's license registrants to answer the question “Do you want to be an organ donor?” Illinois has a registration rate of 60% compared to 38% nationally. Alternative sources of organs (not really viable significant options at present, but possibly in the future) include animal organs (currently only really heart valves in use, worries about transmitting infections), artificial organs and stem cells.Using ‘high-risk’ donors refers to using older donors, or those with a risk of passing on infectious diseases or malignancy. They would normally be turned down for donation. The question is whether it is better to receive an organ that may give you cancer, or no kidney at all? Who should make this decision? How should patients be counselled? Complex
- This demonstrates the fact that in two countries with a similar ethnic/cultural make-up the decision to be opt-in or opt-out has a significant effect on consent rates for organ donation following death.
- Depending on time could ask audience to discuss in pairs.
- In the UK we have an opt-in system.The BMA’s medical ethics committee produced a report in Feb 2012 recommending that the UK move to an opt-out system with safeguards. Proposals were put before parliament in Dec 2012 for Wales to become opt-out. The Human Transplantation Bill was passed by the National Assembly for Wales on July 2nd 2013. The plan is for this to become law by 2015. A two year information campaign will now commence. They have gone for a ‘soft opt-out system.’ A persons consent to donation after their death will be presumed unless they objected during their lifetime. BUT, where those close to them object this will still be taken into consideration. Those who lack capacity will automatically be excluded. People will need to be over 18 and to have lived in Wales for 12 months for the law to apply.
- In India, Africa and China there is an illegal black market in organ trade, particularly kidneys. In Iran there is a legal trade in kidneys. Some argue that taking organs from living people goes against the principle of “first do not harm?” whilst others argue that not relieving someone's poverty does more harmSome believe that the selling and buying of organs is morally objectionable. Others believe that it is not morally wrong in itself, but that the systems in place are inadequate to ensure safety and fairness. 2003 estimates from the World Health Organisation believe that the price of a trafficked kidney ranges from $700 in South Africa to over $30,000 in the US
- There are limited data on the outcomes of those that sell their organs but a 2002 JAMA article reported that of Indian organ sellers 96% sold an organ to pay off debts, 74% were still in debt 6 years later, 86% reported a deterioration in their health, and 79% would not recommend to others that they sell their kidneys. (Goyal M, Mehta RL, Schneiderman LJ, et.al. Economic and health consequences ofselling a kidney in India. JAMA, 2002; 288(13):1589-1593.)Financial incentives other than direct purchase of an organ might include helping with funeral costs of a donor, or donating to a charity on their behalf.Some people believe that any financial incentive is coercive and may sway people to donate “against their better judgement.” Others believe that it goes against the nature of “gifting” and altruism with which organs are currently donated. ‘Donors’ are often poor, and are exploited by traffickers. They receive a fraction of the agreed price, and have very poor per-operative and after care.
- No such programmes exist in the UK. It is argued that this is more equitable. But it is unfair to those who are unable to be donors themselves – think about HIV positive people, and those with other chronic diseases.
- There has been a significant increase in living donors over the last decade. Only certain organs can be donated by living people, including kidneys, parts of the liver and part of the lung. Kidney donation is by far the most common. An altruistic donation started the longest chain of kidney donations, resulting in 60 people receiving kidney transplants. This was made possible by the initial altruistic donation of the first donor MrRuzzamenti. In USA. Donors can donate after a thorough physical and psychological assessment. Interesting to consider ethics – “first do no harm” in this context. In the UK 1st April – 31st March each year:2007-8: 6 donations2008-9: 15 donations2009-10: 15 donations2010-11: 28 donations2011-12: 34 donations2012-13: 76 donations Since 1st April 2013 there have been 3- altruistic donations See http://livingkidneydonation.co.uk/ for up to date stats.
- We have now considered a number of possible strategies to increase the pool of donors. The two that are starred are in use in the UK. An opt-out system will be starting in 2015 in Wales.
- They should hopefully talk about the practical aspects of what actually happens and what their role in the process is.
- Ask the audience what they think the answer is.
- Exceptions: some of the Roma Gypsy community and some Jehovah’s witnesses
- Family members have no legal right to veto or overrule the wishes of a competent adult who has given their consent to donation prior to their death. A SNOD would be heavily involved in this process. The difficulty is that the person who gave consent is dead but the relatives are living and will have to live with the consequences. Doctors must consider the harm that may be done to the living family members if organs were taken from their loved one if they had very strong views.
- We thought about these questions at the start of the session. Have another look and think about whether your opinions have changed at all, and whether you feel more confident to discuss the issues that surround these questions.