Article Text

Download PDFPDF

Ethics briefings
  1. J Tizzard,
  2. C Harrison,
  3. R Mussell,
  4. J Sheather,
  5. A Sommerville,
  6. D Hamm
  1. BMA House
  1. Danielle Hamm, BMA House; dhamm{at}bma.org.uk

Statistics from Altmetric.com

Request Permissions

If you wish to reuse any or all of this article please use the link below which will take you to the Copyright Clearance Center’s RightsLink service. You will be able to get a quick price and instant permission to reuse the content in many different ways.

GOVERNMENT ACCEPTS TASKFORCE RECOMMENDATIONS ON ORGAN DONATION

In January 2008, the Government-commissioned Organ Donation Taskforce published its report on organ donation in the UK. Established in December 2006, the Taskforce was given the brief of identifying barriers to donation and transplantation and suggesting solutions aimed at closing the widening gap between the number of donated organs and the number of those waiting for a transplant.

Implementation of the Taskforce’s 14 recommendations, which were accepted in full by the Government, would constitute a radical reorganisation of the organ donation and transplant system in the UK. With £11 million committed by the Government, work will begin to establish an Organ Donation Organisation which will centrally employ transplant coordinators.

Although NHS Trusts will no longer employ the transplant coordinators, they will have other responsibilities, most notably to set up the post of a clinical donor champion, who will seek to maximise donation locally, oversee training and report donation activity to a donation committee in each Trust. The aim of these moves is to make donation a normal occurrence within the NHS.

This focus on local implementation will be backed up by a national framework of monitoring, coordination and guidance. According to the report, there are a number of legal and ethical issues surrounding donation that need to be resolved. When people die in intensive care, treatment can be withdrawn in a controlled way. However, when someone dies on a hospital ward and either they or their relatives have consented to donation, steps need to be taken to preserve the organs for transplantation. The Taskforce recommended that such issues are urgently addressed and that an independent UK-wide Donation Ethics Group should be established.

Finally, the Taskforce report recommended better public recognition and promotion of organ donation. Black and minority ethnic communities in particular need to be approached in order to increase the donation rate in populations where the need for organs is often higher than that of caucasians. The report urges the Department of Health to commission research aimed at better understanding the barriers to donation for these ethnic groups. The full report is available from http://www.dh.gov.uk.

The Organ Donation Taskforce has been asked by the Government to look into the practical, legal, ethical and societal issues surrounding the presumed consent model of organ donation (see below); the Taskforce is due to report in the summer of 2008.

DEBATE ON PRESUMED CONSENT SPREADS ACROSS UK

Although some strong voices object, over the past year the UK has seen a marked shift of opinion among the public, the media, politicians and government broadly expressing more interest in a presumed consent model of organ donation. Under the presumed consent model, adults would automatically be registered as organ donors, unless they decided to opt out of the system. The British Medical Association (BMA) has long advocated a “soft system” of presumed consent and welcomes the current debate. A soft system, as proposed by the BMA, would still give weight to the wishes of the patient’s relatives; after death, relatives would be informed that their relative had not opted out of donation and—unless they object, either because they are aware of an unregistered objection by the individual or because it would cause major distress to the close relatives—the donation would proceed.

As reported previously in Ethics briefings,1 the Chief Medical Officer for England announced his support for a soft system of presumed consent in summer 2007. Subsequently the Chief Medical Officers for Wales and Scotland both announced their support, with the proviso that there is public support for such a system. The Prime Minister, Gordon Brown, has also announced his personal support for presumed consent and called for a public debate on the matter. A short debate on presumed consent has been held in both the Welsh Assembly and the Scottish Parliament, and the Welsh Assembly has committed to holding a public consultation on the issue. Both the Sunday Herald and the Observer newspapers have further fuelled public debate on the issue through the launch of separate campaigns for presumed consent.

In January 2007, Baroness Ilora Finlay’s Kidney Transplant Bill received a second reading in the House of Lords. The Bill proposes a system similar to soft presumed consent for organ donation, but only for the removal of one kidney. Almost all contributors to the debate were in favour of presumed consent, although not necessarily the Bill—many felt that it did not go far enough by only applying to one kidney.

This shift in government thinking has been matched in parallel by an apparent shift in public opinion. In October 2007, a YouGov survey found increasing support among the public: 64% in favour (with 23% opposed) compared with 59% in favour (and 31% opposed) in 2004. In the 2007 survey, 74% of those from Scotland supported presumed consent.2

HUMAN FERTILISATION AND EMBRYOLOGY BILL HEADS FOR HOUSE OF COMMONS

The UK Human Fertilisation and Embryology Bill completed its passage through the House of Lords in January 2008. One controversial aspect of the original Bill, published in November 2007, was the removal from the existing legislation of reference to a child’s “need for a father” as part of the consideration about whether or not to allow access to IVF treatment. Under the current system, when single women or lesbian couples seek treatment, the clinic must consider the women’s ability to meet the needs of the child, whereas heterosexual couples are merely required to demonstrate that their child, if born, would not face serious harm. The Government’s aim in the original Bill was to remove the basis for this differential treatment, which in some cases has led to blanket discrimination against single women. However, opposition in the House of Lords led ministers to come up with a compromise amendment, instead requiring clinics to consider the child’s need for “supportive parenting”. The compromise was accepted by the Lords, although the issue is likely to be discussed further in the House of Commons.

In the research arena, three-quarters of peers voted in favour of the creation of human/animal embryos, known in the Bill as “human admixed embryos”, for stem cell research. A number of peers argued, however, that some aspects of the Bill would hinder some important areas of research and treatment. The creation of eggs and sperm from stem cells—either adult or embryonic—for use in treatment is prohibited, as is the use of embryonic stem cell lines in therapy (although their use in research, including clinical trials, is permitted). Finally, because of the strict consent requirements under the Bill, embryonic stem cell research into serious childhood diseases using cells from young sufferers is prohibited, as is the creation of embryos for research using existing anonymised cells which were donated for research. Peers pushed for changes to the Bill to make these activities possible, but an agreement was not reached before the Bill left the House of Lords.

Embryo testing, specifically preimplantation tissue typing (a procedure used to identify embryos that are genetically compatible with an existing child), also generated considerable discussion in the Lords. After a Government amendment, the procedure will be prohibited in statute where organ donation to the existing sick sibling is intended, although selection with the intention of harvesting umbilical cord blood stem cells or bone marrow is permitted. An attempt to ban the procedure altogether was rejected, however, with three-quarters of peers voting against.

CONSULTATION ON PANDEMIC FLU

At the end of 2007, the Government issued a trio of consultation documents on anticipated responses to a future pandemic flu outbreak. The documents raised a number of interesting ethical issues in relation to the prioritisation of health services, the possibility of amending legislation dealing with the supply of medicines, and the deployment of human resources.35 Given the pressure on health services that are likely to result from a flu pandemic, the government was looking at a number of ways to increase flexibility and responsiveness. The consultation on medicines looked at the development of protocols for the mass supply of key medicines, extending the ability for pharmacists to supply medicines in an emergency and to increase access to over-the-counter medicines. Interesting proposals in relation to staffing included the potential use of retired staff, medical students and volunteers, and re-allocating staff into those specialties most likely to be under stress during a pandemic. The document on prioritisation laid out a set of decision-making criteria for use in triage involving adults in primary care, accident and emergency, and secondary care settings that have been adapted from a system developed in Canada.6 The document stated that the protocol is in keeping with the Department of Health’s overall ethical framework for managing a pandemic flu.7

MENTAL HEALTH ACT DRAFT CODE OF PRACTICE

Following the passage of the Mental Health Act 2007, which amends the Mental Health Act 1983, the Government issued a draft Code of Practice for consultation. During the progress of the amending legislation, strong concerns were expressed by a wide variety of professional and user groups, including the BMA, about the possibility that the legislation could permit the confinement of certain mentally disordered individuals, even where no treatment could be provided. As reported in previous Ethics briefings,8 a significant number of concessions were made by the Government at the last minute, including a clause stating that powers for compulsory treatment could only be used where medical treatment is available “the purpose of which is to alleviate, or prevent a worsening of, the disorder or one or more of its symptoms or manifestations.”9 Subsequently, however, the draft Code of Practice has reignited concerns about the possibility that the legislation is being uncoupled from any reasonable intention to provide medical treatment. For example, paragraph 6.12 of the Code, which relates to the appropriate medical treatment test, states that “where appropriate medical treatment is available, no one should be excluded from detention, or discharged, solely because it cannot be shown that the treatment is not only for the right purpose but is likely to produce a particular benefit or outcome.”10 Such drafting is, at best, ambiguous, and creates the potential for genuine uncertainty about the purposes of the legislation. The Government seems to be suggesting that the likely outcome of an intervention is irrelevant to its purpose.

CONFIDENTIALITY TOOLKIT

The BMA Ethics Department has published the first edition of its Confidentiality and disclosure of information toolkit. Questions about confidentiality and disclosure are a significant area of ethical enquiry for the BMA, and the volume of queries exceeds other issues of ethical concern raised by BMA members. The toolkit provides a very brief summary of the legal and ethical provisions in relation to confidentiality and disclosure of information. It is not intended to be a detailed guide but provides a list of sources where further advice and information can be obtained for specific areas of confidentiality such as children, adults who lack capacity, and the deceased. The toolkit is available from the BMA’s website: www.bma.org.uk.

REFERENCES

Other content recommended for you