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Review of the Human Fertilisation and Embryology Act 1990
Historically the UK has taken its time to ponder the controversial issue of regulating assisted reproduction, with a delay of some six years between the original call for legislation in the Warnock Report1 and the Human Fertilisation and Embryology Act becoming law. In between there was much consultation and debate – following the Warnock Report came a green paper (consultation document) in 19862 and a white paper (proposals for legislation) in 19873 before the bill was finally published in 1989. The review of the legislation is similarly being undertaken at a leisurely pace with plenty of time and opportunity for consultation. In 2003, we saw the House of Commons Science and Technology Committee’s Inquiry into reproductive technologies and the law, which reported in March 2005.4 This was followed in July 2005 by a full public consultation document from the Department of Health.5 The consultation ended in late November. References in that document to changes planned for 2008 imply that this is one piece of legislation that will not be rushed through.
The government decided that some issues – such as the use of embryos for research – are firmly settled and will not form part of the review, whilst other fundamental issues, such as the role and scope of the regulatory body, are open for debate. While much of the consultation covered detailed aspects of the legislation and its interpretation, which are principally of interest to those practising in the UK, other issues were raised that are of more global interest. The UK, like a number of other countries, has recently changed its rules so that donors are no longer to be anonymous and offspring can, on reaching the age of maturity, obtain identifying information about the donor. Many people argued for this change on the basis that these people have “a right to information about their genetic heritage”. Yet, in all jurisdictions it is left to the parents to decide whether to inform their offspring that they were born following donation – so while we have got rid of anonymity, we still have secrecy. One of the questions the consultation asked is what measures would be appropriate, if any, to ensure that parents tell children conceived through gamete or embryo donation that they are donor conceived. One suggestion made in the paper was that “by donation” should be included on the long version of the birth certificate. Although any suggestion of forcing parents to tell has previously been rejected, the last decade has seen growing support for the “rights” of donor offspring to information. The responses received to this particular question will provide a useful measure of the tide of public and professional opinion in relation to the appropriate balance to be achieved between the so-called rights of offspring and those of their parents. As Frith has argued “if it is felt that knowledge of one’s genetic heritage is indeed a fundamental right then it might seem unsatisfactory to leave such a decision solely to the parent’s discretion”.6
More on medical tourism
We have previously reported in Ethics briefings much publicised plans for “floating” abortion and euthanasia clinics on board ships.7 By sailing out to international waters before undertaking the procedure, the ship is acting under the legal jurisdiction of the country in which it is registered. Plans by Dr Philip Nitschke, reported in 2001, to register a ship in the Netherlands to practice euthanasia off the coast of Australia have not progressed. Dutch doctor Rebecca Gomperts, however, and her organisation Women on Waves, have registered a ship in the Netherlands, where abortion is legal, with the intention of stopping off the coast of countries such as Ireland, Poland, and Portugal where abortion is not permitted. The main aim of the group is to support local groups campaigning for safe abortion but it also plans to offer contraceptive advice and abortions in some cases. The venture has not, however, been plain sailing.
The Dutch Termination of Pregnancy Act requires a licence to be granted for doctors to perform abortions but Women on Waves was refused a licence by the Dutch government.8 Despite much legal wrangling, at the time of writing the licence has still not been granted. As the provision of medication such as mifepristone (RU486) during the first 16 days after a missed menstrual period is not covered by the legislation, however, Women on Waves can provide early medical abortions using this method.
The ship has sailed to other countries and has met with mixed reaction. On its first trip, to Ireland in 2001, it was reported that no abortions were performed.9 In Poland, in 2003, despite its crew facing protests and being fined by the port commander, the ship made a small number of trips to international waters with Polish women aboard although no details are available of what, if any, services were provided.10 In August 2004 it faced further problems after the ship was denied permission from the government of Portugal to enter Portuguese waters in order to provide contraceptive advice in port and to take women out to sea to carry out early medical abortions.11 The Portuguese government’s decision was raised in oral questions in the European Parliament in September 2004. The question of whether the decision breached EU law was left unresolved after a sometimes heated debate, which inevitably strayed from the right to freedom of movement within Europe to the acceptability or otherwise of abortion itself. The European Commission, however, has said it would seek an explanation from the Portuguese government about the precise motives and implications of its decision.12 The legal wrangling continues.
Not deterred by these hazards, media reports in late summer 2005 suggested that the founder of the Danish sperm bank Cryos, is planning a similar scheme to provide fertility treatment on a ship off the coast of the UK. The treatments proposed include insemination with sperm from anonymous donors, which will no longer be permitted in the UK, and sex selection for social reasons.13 It has been reported that the venture will rely upon doctors from the UK to carry out the treatments. Perhaps this is another issue for consideration in the review of the Human Fertilisation and Embryology Act 1990 (see above).
A right to require treatment – update
We reported in Ethics briefings in May 2005 the successful challenge to the General Medical Council’s (GMC) guidance on withholding and withdrawing treatment.14 The case concerned a patient who claimed that it should be for him, and not for doctors, to decide whether he received artificial nutrition and hydration when competence was lost towards the end of his life. In the High Court, Mr Justice Munby ruled in July 2004 that the GMC’s guidance was not compatible with the Human Rights Act 1998 because it did not state that patients have the right to require treatment. In July 2005 the Court of Appeal overturned this decision stating that “autonomy and the right to self-determination do not entitle the patient to insist on receiving a particular medical treatment regardless of the nature of the treatment”.15 Nevertheless, contrary to some of the more sensationalist media reporting of the judgment, the Court of Appeal also made clear that the patient would receive artificial nutrition and hydration. This was because doctors have a duty to take reasonable steps to keep patients alive if those patients, when competent, made clear their desire for life-prolonging treatment, regardless of the pain, suffering or dignity of their condition.
End of life – update
In previous Ethics briefings, we have referred to the House of Lords Select Committee on the Assisted Dying for the Terminally Ill Bill (Joffe Bill).16 Its authoritative report and summary of evidence were published in April 2005.17,18,19 Amongst the report recommendations was a call for a full House of Lords debate on the report’s findings, scheduled for October 2005. At the time of writing, a further assisted dying bill is expected to be introduced into the House of Lords, incorporating amendments suggested by the Select Committee. Among these was the suggestion that, in the event of legal change, health professionals who conscientiously object to assisted dying should have no duty to refer patients seeking it elsewhere since such an obligation would infringe their rights to abstain from all involvement. October was also the deadline for a consultation held by the All-Party Parliamentary Group Compassion in Dying. It intended to capture a broad cross-section of views on the safeguards that should be available if the law changes to allow people suffering from a terminal illness to have help to end their life. Among the safeguards suggested was the proposal that any terminally ill patients requesting assisted dying must not only have been offered palliative care but must have had some compulsory experience of it for a minimum of seven working days. A summary of responses was promised on the group’s website in the “opinion formers section” of www.politics.co.uk.
Availability of palliative care remained a matter of considerable debate in autumn 2005. The patchy UK provision of such care had been highlighted by the Select Committee’s report, which also claimed that the availability of assisted dying in Oregon had apparently stimulated the expansion of hospice care. It also said that in the absence of accessible and good quality palliative care, any future UK patients choosing assisted dying could not be deemed to be making an informed choice. In response, as part of a package of reforms, the government announced that it intended to publish a white paper on end of life care in late 2005 and to double its spending on palliative care services. Its aim was to remove the taboos around discussion of death and provide more support for patients dying at home.20