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Ethics body suggests NHS pays for funerals of organ donors

[The following Press Release was issued by Nuffield Council on Bioethics on 10 October 2011]

ETHICS BODY SUGGESTS NHS PAYS FOR FUNERALS OF ORGAN DONORS

The NHS should test the idea of paying for the funerals of organ donors to help tackle the current shortage of organs, says a new report by the Nuffield Council on Bioethics. The Council suggests that this would be an ethical way of encouraging more people to sign the Organ Donor Register. Under such a scheme, funeral expenses would be offered if someone who has signed the Organ Donor Register dies in circumstances where their organs can be donated to others.

Professor Dame Marilyn Strathern, who chaired the 18-month inquiry which led up to this report, said: “Government initiatives to improve the health of the population are crucial to reducing the number of people in need of organs in the UK, but we must also take reasonable steps towards increasing the number of potential donors. The possibility of sparing relatives the financial burden of a funeral might encourage more people to register as donors”.

“Paying for the funerals of organ donors would be ethically justified - no harm can come to the donor, and it would be a form of recognition from society. We think a pilot scheme to test the public response to the idea is worth trying, alongside other schemes,” said Professor Strathern.

In the UK, there are 8,000 people on the waiting list for an organ transplant and they will wait an average of three years for a suitable donor to become available. Three people die every day whilst waiting for an organ. Currently, 18 million people – around 30% per cent of the UK population - are signed up to the Organ Donor Register, but the NHS are aiming to increase this to 25 million by 2013.

The Council’s report, ‘Human bodies: donation for medicine and research’, considers how far society should go in trying to encourage people to donate their bodily material, including organs, eggs, sperm, blood, tissue and whole bodies. It concludes that altruism should continue to be central to our approach to all types of donation as it underpins important community values, but this does not exclude the possibility of allowing some form of payment in some circumstances. The report therefore proposes an ‘Intervention Ladder’ to help policy makers consider the ethical acceptability of various ways of encouraging people to donate.

Living organ donors

In the UK it is against the law to offer or accept payment to donate organs for the treatment of others. “We endorse this and agree that living donors, such as kidney, blood and bone marrow donors, should not receive payment other than direct and complete reimbursement of the costs brought about by their donation,” said Professor Strathern. “Rewarding living organ donors by paying more than this does not change the risks of donation, but there is a possibility that it might undermine the motive of helping others in need - we believe this motive should be preserved as far as possible.”

“Opt-out”

Spain and Belgium have ‘opt-out’ systems for deceased organ donation, where it is assumed that people consent to donation unless they objected to this before they died, or their family objects. A similar system may soon be introduced in Wales and, if it is, the Council recommends robust research into the effect it has. “There is uncertainty about whether or not an opt-out system would lead to more organs being donated. A clear evidence base should be established before changes are considered elsewhere in the UK,” said Keith Rigg, a transplant surgeon at Nottingham University Hospital and one of the authors of the report.

However, the Council supports ‘mandated’ or ‘prompted’ choice systems, where people are required or urged to make a choice about organ donation during their lifetime – providing people have the opportunity to make any objections clear too. From August this year, people applying for a driving licence in England, Wales and Scotland have to indicate their wishes about organ donation when completing the DVLA application form online. However, they are not given an explicit option to say no. “We think it is very important for people’s wishes to be known in advance, but a compulsory choice system is only ethical if it includes an option to say ‘no, I don’t want my organs to be donated’,” said Professor Strathern.

Egg and sperm donation

The report also considers the donation of eggs and sperm for use in fertility treatment and research. Shortages in supply of donor eggs and sperm have left many people who want treatment facing long waiting lists as fertility clinics struggle to meet demand.

“We would like to see the £250 cap on egg and sperm donor expenses removed to ensure that lost earnings are reimbursed in full. People who are willing to donate for other people’s treatment should not be left out of pocket,” said Professor Strathern.

Furthermore, the report suggests that payment over and above expenses should be offered to those who are prepared to donate eggs for research, in return for the discomfort and inconvenience they experience. “Donating eggs for research purposes is different from donating to help someone else’s treatment. You’re not usually trying to help a particular individual – you are more a participant in a research exercise. A good comparison is that we already pay healthy volunteers to test medicines. We think it would be ethically justified to offer payment to women who are willing to give their time and undergo uncomfortable procedures in order to donate eggs for research,” said Professor Strathern.

NHS restructure

Increasing the potential number of donors is only one half of the story, says the Council. Efficient procedures and sound organisational structures must be in place to make the maximum benefit of donated material.

The Council recommends that the Department of Health should closely monitor the impact of any proposed changes to organ donation services, for example, and be prepared to act to protect systems that have been shown to work well.

“In light of proposed organisational changes to the NHS in England and pressure on health budgets, there is clearly a risk that improvements seen in recent years in the number of organs available to transplant might be lost,” said Professor Strathern.

The report also calls for a national or regional donor service to be set-up to improve co-ordination of egg and sperm donation for fertility treatment, along the lines of the current system for organ and blood donation.

The report includes further recommendations in the areas of the use of tissue in research and volunteering for clinical trials.

Notes to editors

  1. Contact to arrange an interview or for further information

    Sarah Bougourd
    Communications Officer
    Nuffield Council on Bioethics
    28 Bedford Square, London WC1B 3JS

    Phone: +44 (0)20 7681 9619

    Mob: +44 (0)7821 449 725

    Email: sbougourd@nuffieldbioethics.org

  2. The report

    Copies of the report will be available to download from the Council’s website www.nuffieldbioethics.org from 22:00 BST on Monday 10 October 2011. To request an advance copy, please contact Sarah Bougourd (see above).

  3. Background

    The Nuffield Council on Bioethics established a Working Party in 2010 to examine the ethical issues raised by the donation of human bodily material in medicine and research. The Working Party, chaired by Professor Dame Marilyn Strathern, included members with expertise in transplant surgery, clinical research, ethics, philosophy, medical law, fertility services, health psychology, economics, anthropology and the pharmaceutical sector.

    To inform its deliberations, the Working Party:

    • held a public consultation from April to July 2010, during which 179 contributions were received from a wide range of organisations and individuals.
    • held a deliberative workshop with members of the public in Bristol in July 2010, funded by a People Award from the Wellcome Trust.
    • held ‘fact-finding meetings’ with, for example, health professionals, regulators and academics.

    The Working Party developed an ethical framework including an ‘Intervention Ladder’ for analysing the ethical acceptability of different forms of encouragement for donating bodily material in various circumstances. The six steps of the intervention ladder are:

    1. information about the need for the donation of bodily material for others’ treatment or for medical research
    2. recognition of, and gratitude for, altruistic donation, through whatever methods are appropriate both to the form of donation and the donor concerned
    3. interventions to remove barriers and disincentives to donation experienced by those disposed to donate
    4. interventions as an extra prompt or encouragement for those already disposed to donate for altruistic reasons
    5. interventions offering associated benefits in kind to encourage those who would not otherwise have contemplated donating to consider doing so
    6. financial incentives that leave the donor in a better financial position as a result of donating

    Numbers one to four are all ‘altruist-focused interventions’, intended to stimulate people’s altruistic motivation. Numbers five and six are non-altruist-focused interventions.

    Full details of the method of working can be found in the report. Where permission has been granted, individual consultation responses will be available on the Council’s website www.nuffieldbioethics.org from 22:00 BST Monday 10 October 2011.

  4. 4 Working Party members

    • Professor Marilyn Strathern
      Former Mistress, Girton College Cambridge and William Wyse Professor of Social Anthropology, Cambridge University
    • Professor Janet Darbyshire
      Emeritus Professor of Epidemiology, University College London; formerly Director of the MRC Clinical Trials Unit and Joint Director of the NIHR Clinical Research Network
    • Professor Bobbie Farsides
      Professor of Clinical and Biomedical Ethics, Brighton and Sussex Medical School
    • Professor Sian Harding
      Professor of Cardiac Pharmacology, National Heart and Lung Institute, Imperial College London and member of the Nuffield Council on Bioethics
    • Dr Tim Lewens
      Reader in Philosophy of the Sciences, Department of History and Philosophy of Science, University of Cambridge and member of the Nuffield Council on Bioethics
    • Dr Gillian Lockwood
      Medical Director, Midland Fertility Services, West Midlands
    • Professor Theresa Marteau
      Professor of Health Psychology, King’s College, London, and Director of the Behaviour and Health Research Unit, Institute of Public Health, University of Cambridge
    • Professor Naomi Pfeffer
      Honorary Research Associate, Department of Science and Technology Studies, University College London
    • Professor David Price
      Professor of Medical Law, De Montfort University
    • Mr Keith Rigg
      Consultant Transplant Surgeon, Nottingham University Hospitals NHS Trust
    • Professor Bob Simpson
      Professor of Anthropology, Durham University
    • Professor Chris Womack
      Principal Clinical Histopathologist, AstraZeneca, and Honorary Professor, School of Cancer and Enabling Sciences, University of Manchester
  5. About the Nuffield Council on Bioethics

    The Nuffield Council on Bioethics examines ethical issues raised by new developments in biology and medicine. Established by the Nuffield Foundation in 1991, the Council is an independent body, funded jointly by the Foundation, the Medical Research Council and the Wellcome Trust. The Council has achieved an international reputation for addressing public concerns, and providing independent advice to assist policy makers and stimulate debate in bioethics.