Medical Ethics Today

A new edition of the BMA’s handbook of ethics and law, Medical Ethics Today will be published in December. Based on the large volume of enquiries to the BMA’s medical ethics department, the book offers practical advice and guidance on common ethical and medico-legal dilemmas. It also aims to stimulate debate on broader areas of public policy. For more information, see the BMA website www.bma.org.uk/ethics.

Confidentiality and HIV in Australia

The availability of skilled doctors is both a necessary and an incontrovertible public good.

The New South Wales Supreme Court has ruled that a woman can claim damages against doctors who failed to disclose her partner’s HIV status to her whilst she was under their care.¹ Disclosure of people’s HIV status to their sexual partners without their consent obviously raises important issues about duty of care, public interests, and confidentiality. In this case, at the woman’s insistence both partners agreed to be HIV tested before getting married. She tested negative but he was found to be HIV positive. Neither received the other’s test results from the medical centre because of confidentiality rules. The doctor who informed the man of his positive status failed to discuss specifically with him the importance of telling his future wife, assuming that this was obvious to “a neatly dressed man who appeared to be educated”. The man, however, when asked by his partner for his results, lied to her and said he had tested negative. After they married and had unprotected sex, the woman was diagnosed HIV positive.

In Australia, the Public Health Act 1991 permits disclosure of patients’ HIV status to their sexual partner if patients themselves refuse to do so. This provision is mirrored in the UK both in common law and guidance from the General Medical Council, which says that if doctors cannot persuade patients to disclose their HIV status, confidentiality can be breached to inform a known sexual contact of an HIV positive patient.² Wherever possible, however, this must first be discussed with the patient. While the Australian case emphasises the importance of specifically advising HIV infected patients to inform their sexual partners rather than assuming that they will do so, it also clarifies that the doctor’s duty of care can extend beyond the individual patient being tested and treated.

Consent for MMR vaccination

In England, the Court of Appeal has ruled that it would be in the best interests of two children to be vaccinated (including with the mumps, measles, rubella [MMR] vaccine) with their fathers’ consent but against the wishes of their mothers who were their primary carers.³ In both cases, the parents were unmarried and living apart but both fathers retained parental responsibility allowing them to consent to medical procedures that were in the children’s best interests. In order to resolve the dispute between the parents, the fathers sought specific issue orders under s8 of the Children Act 1989 for the children to be immunised and the court ruled that, based on the available medical evidence, vaccination would be in the children’s best interests. Although there are precedents for the court adjudicating in cases of parental disagreement over significant treatment decisions for children, this case marks the first of its kind over a dispute about vaccination.

Despite the Court of Appeal concurring with the lower court’s view that this decision should not be seen as a general approval of immunisation for children, the decision has sparked criticism from antiMMR campaigners who believe the judgment reflects a “big brother bully state”,⁴ with some suggesting that the ruling effectively authorises compulsory childhood immunisation.

Embryo selection for tissue typing

In December 2002 Ethics briefings reported on two decisions by the Human Fertilisation and Embryology Authority on the use of preimplantation genetic diagnosis (PGD) combined with HLA (human leukocyte antigen) typing to select for replacement those embryos most likely to produce a child who would be a good tissue match for a very sick sibling.⁵ In one case (the Hashmis) the HFEA approved PGD primarily to avoid the birth of another child with a serious genetic disorder but also to test the embryos for those that would provide a suitable tissue match. In the second case (the Whitakers) the future child itself was not at risk of the condition and the HFEA refused to allow permission for PGD to be undertaken solely for tissue typing. In both cases it was intended to use stem cells from umbilical cord blood for the treatment, so the children would not be subjected to any invasive procedures. Two events have kept this issue in the public domain.

The Prolife Alliance sought a judicial review of the HFEA’s decision to allow tissue typing in the Hashmi case, arguing that the HFEA had exceeded its legal powers. Under the Human Fertilisation and Embryology Act, the HFEA can only issue treatment licences for the provision of “treatment services”, defined as “assisting women to carry children”. In upholding the challenge, Mr Justice Maurice Kay held that since the reason for requesting tissue typing did not arise from an impaired ability to conceive or to carry a child through pregnancy to full term and birth, it could not be argued that it was “necessary or desirable” for the purpose of assisting a woman to carry a child and therefore could not be licensed.⁶ This decision was, however, overturned by the Court of Appeal, which rejected this narrow interpretation. Lord Phillips said: “when concern as to the characteristics of any child that she may bear may inhibit a woman from bearing a child, IVF treatment coupled with PGD that will eliminate that concern can properly be said to be ‘...for the purpose of assisting women to carry children’”.⁷ He went on to say that decisions about whether, and for what purposes, such a choice should be permitted raised difficult ethical questions, responsibility for which, parliament has placed in the hands of the HFEA.

Shortly after the appeal court judgment it was reported in the media that the Whitakers had travelled to America for the treatment and that Mrs Whitaker had given birth to a son.⁸ It was subsequently reported that the child was, as hoped, a suitable tissue match for his older brother.⁹ Many commentators, including the BMA, expressed regret that the Whitakers needed to go to another country for their treatment, where they did not have the safeguards provided by the regulatory mechanism in the UK. Given the public support expressed for the Whitakers’ action, perhaps it is time for the HFEA to reconsider its policy.

“Health tourism”

In the UK, where the government has signalled its intention to tighten National Health Service (NHS) rules relating to charging overseas visitors for treatment, health care workers may increasingly confront dilemmas regarding the provision of care to non-nationals. One group particularly singled out by the government includes “failed asylum seekers and others with no legal right to be in the country” (Department of Health press release: Hutton proposes tighter NHS rules for treating overseas visitors, 29 July 2003).

In July 2003, a government consultation paper was published, inviting comments on a series of proposed changes.¹⁰ While the regulations governing charges to overseas visitors are complex and could benefit from rationalisation, the potential ramifications of some proposed changes give rise to concern. Although free entitlement to emergency treatment for all is unchanged, it is likely that health care workers will have to deny non-emergency care to sick or vulnerable individuals. Interestingly, the consultation document was released shortly after the All Party Parliamentary Group on AIDS issued a sobering report on the impact of the UK immigration system on people living with AIDS.¹¹ One of its major conclusions was that the government should be looking for ways of “increasing access to treatment among vulnerable individuals in order to limit the risk of transmission to others and to limit the cost to the NHS in the long run”.¹² The British Medical Association publicly expressed concern about the health of failed asylum seekers awaiting deportation, considering it “totally unjustifiable” to leave this vulnerable group of people without treatment for chronic illnesses for unspecified periods of time (British Medical Association press release: BMA response to government clampdown on “health tourists”, 29 July 2003). Behind the headlines lie perennial ethical questions about the extent to which health care workers might refuse to treat people who cannot pay and about the limits of a state’s obligations to non-nationals.

Draft Mental Incapacity Bill

In June 2003, the long awaited Draft Mental Incapacity Bill for England and Wales was published and a parliamentary committee established to review the bill, which will call for evidence and report to both Houses of Parliament by late November. Information about the inquiry and its progress can be found at parliament’s website.^13,14 The bill, if it is passed, will put the law in England and Wales on a similar footing to Scotland, whose Adults with Incapacity (Scotland) Act was passed in 2000. For a discussion of the Adults with Incapacity (Scotland) Act, see English V, Romano-Critchley G, Sommerville A, et al.¹⁵ Similarly, the English bill aims to clarify and improve the process of decision making on behalf of incapacitated adults and covers both health and general welfare decisions. It proposes a “general authority to act” on behalf of incapacitated adults providing the proposed action is reasonable and in the individual’s best interests. It also contains provisions for individuals to give lasting powers of attorney (LPA) to people who could then decide about issues such as health care on their behalf, once capacity is lost. It is not envisaged, however, that the LPA would extend to decisions about withdrawing or withholding life prolonging medical treatment unless explicitly stated in advance. The bill also intends to create a new court of protection with powers to make certain decisions on behalf of incapacitated individuals or to appoint deputies to do so. The bill also proposes to give statutory force to valid advance refusals of treatment (“living wills”) which are only covered by common law at present.

Although the draft bill helpfully addresses some problem areas, it avoids others. Consideration is not given—for example, to interventions that do not necessarily promote the best interests of incapacitated individuals but are not contrary to their interests and strongly benefit others, such as genetic testing to help relatives. It is likely, therefore, that these kinds of questions will continue to arise.