In this paper we question whether the concept of "genetic privacy" is a contradiction in terms. And, if so, whether the implications of such a conclusion, inevitably impact on how society comes to perceive privacy and responsibility generally. Current law and ethical discourse place a high value on self-determination and the rights of individuals. In the medical sphere, the recognition of patient "rights" has resulted in health professionals being given clear duties of candour and frankness. Dilemmas arise, however, when patients (...) decline to know relevant information or, knowing it, refuse to share it with others who may also need to know. This paper considers the notions of interconnectedness and responsibility to others which are brought to the fore in the genetic sphere and which challenge the primacy afforded to personal autonomy. It also explores the extent to which an individual's perceived moral obligations can or should be enforced. (shrink)

In the wake of scandals about the unauthorised retention of organs following postmortem examination, the issue of valid consent has returned to the forefront. Emphasis is put on obtaining explicit authorisation from the patient or family prior to any medical intervention, including those involving the dead. Although the controversies in the UK arose from the retention of human material for education or research rather than therapy, concern has been expressed that public mistrust could also adversely affect organ donation for transplantation. (...) At the same time, however, the British Medical Association continues to call for a shift to a system of presumed consent for organ transplantation. This apparent inconsistency can be justified because valid distinctions exist between the reasons requiring explicit consent for retention and the acceptability of presumed consent for transplantation. This paper argues for introducing a system of presumed consent for organ donation, given the overwhelming expressions of public support for transplantation. Ongoing legislative review in the UK provides an ideal chance to alter the default position to one where potential donors can simply acquiesce or opt out of donation. Combined with consultation with their relatives, this could be a much better method of realising individuals’ wishes. It would also achieve a better balance between the duties owed to the deceased and those owed to people awaiting a transplant. (shrink)

Ever so often in the UK, there is a flurry of activity around the information requirements of donor-conceived individuals. In April 2013, it was the launch of a report from the Nuffield Council on Bioethics that brought the issue back to public consciousness.1Since 1991, information about treatment with donor gametes or embryos has been collected by the Human Fertilisation and Embryology Authority . Since then, over 35 000 donor-conceived individuals have been born through treatment in licensed clinics. Medical information and (...) information about donors’ appearance are collected by clinics, and donors are encouraged to put together a ‘pen portrait’ giving information about themselves for any resulting children. One focus of the new report is on improving the quality and quantity of information available about donors.Traditionally, gamete and embryo donations were practised on an anonymous basis, so that those born as a result of such donation may receive only non-identifying information about the donor when they reach the age of 18 . This changed in 2005 when donor anonymity was removed so that anyone donating after that time could be identified to individuals born as a result of the treatment. Those who have donated in the past are also able to reregister as identifiable donors. Much concern was expressed at the time that this would exacerbate the shortage of donors although the Nuffield Council on Bioethics reports that, 8 years on, those clinics that actively recruit donors appear to be successful in finding sufficient donors. The report recommends that the option of anonymous donation should not be reintroduced.A big issue of debate in the UK has been, and continues to be, whether parents should tell their …. (shrink)

Ever so often in the UK, there is a flurry of activity around the information requirements of donor-conceived individuals. In April 2013, it was the launch of a report from the Nuffield Council on Bioethics that brought the issue back to public consciousness.1Since 1991, information about treatment with donor gametes or embryos has been collected by the Human Fertilisation and Embryology Authority. Since then, over 35 000 donor-conceived individuals have been born through treatment in licensed clinics. Medical information and information (...) about donors’ appearance are collected by clinics, and donors are encouraged to put together a ‘pen portrait’ giving information about themselves for any resulting children. One focus of the new report is on improving the quality and quantity of information available about donors.Traditionally, gamete and embryo donations were practised on an anonymous basis, so that those born as a result of such donation may receive only non-identifying information about the donor when they reach the age of 18. This changed in 2005 when donor anonymity was removed so that anyone donating after that time could be identified to individuals born as a result of the treatment. Those who have donated in the past are also able to reregister as identifiable donors. Much concern was expressed at the time that this would exacerbate the shortage of donors although the Nuffield Council on Bioethics reports that, 8 years on, those clinics that actively recruit donors appear to be successful in finding sufficient donors. The report recommends that the option of anonymous donation should not be reintroduced.A big issue of debate in the UK has been, and continues to be, whether parents should tell their …. (shrink)

The Human Rights Act 1998, which came into force in the UK in October 2000, has not prompted the flood of litigation or radical decisions that some commentators predicted. There was speculation, for instance, that the act might be used to challenge the current law on assisted suicide and in fact this has been considered in detail by the courts. A woman with motor neurone disease applied to the court for a guarantee that if her husband helped her to commit (...) suicide, he would not be prosecuted.1 Discussion was particularly interesting in the court of first instance prior to the case going to the House of Lords in November 2001. Although the case before the court of first instance fell on other grounds, the human rights issues were addressed in detail. Assisting suicide is illegal in the UK under the Suicide Act 1961. “A person who aids, abets counsels or procures the suicide of another, or an attempt by another to commit suicide, shall be liable on conviction on indictment to imprisonment for a term not exceeding fourteen years.”2 The court heard it argued that this universal prohibition on assisting suicide was incompatible with the rights of a person who wanted to commit suicide, and was mentally competent but physically unable to do so. The conflict between two fundamental human rights in the European Convention on Human Rights3—the right to life (article 2) and the right to decide what will and will not be done with one's own body (article 3)—was central to the case. Article 2 requires states to prevent people being “deprived of life”. It doesn't, however, require states to take positive steps to force life on the unwilling. Thus the court concluded that article 2 might permit the state to allow assisted suicide, …. (shrink)

Living organ donation in the UKThe prospect of new regulation is often met with reluctance and legitimate fears of additional bureaucracy for very little benefit. Changes to the approval procedure for living organ donation in the UK, however, appear to have made a real, and positive, difference to the practice. The Human Tissue Act 2004 abolished the Unrelated Live Transplants Regulatory Authority and handed responsibility for overseeing living donation to the newly established Human Tissue Authority. On paper, the new system (...) appeared to be a significant improvement on the old one. It removed the illogical disparity between related and unrelated donors. Previously only donations from unrelated individuals needed prior approval and evidence of a genetic link was a green light to proceed without further investigation, suggesting, erroneously, that donation within families was always voluntary and free from pressure and coercion. While the reasoning behind this distinction was obvious—coming as it did in the immediate aftermath of the uncovering of an international trade in human organs—the logic behind the distinction was lacking. Although the list of permitted relationships was broad, donation between spouses, long-term partners or friends was subject to the full and frequently drawn-out approval process designed to prevent surreptitious payment.Now all living organ donation needs prior approval but the system has been streamlined to avoid the long delays that became synonymous with the old system. Under the new regime: Applications are reviewed at a local level by a group of “independent assessors” who have been trained and accredited by the HTA.The independent assessor must be satisfied that the person consenting to the donation has been given and understood the necessary information and that there is no evidence of reward or coercion or evidence that the person has been subjected to pressure to consent. …. (shrink)

A woman from the Republic of Ireland has successfully challenged the country's restrictive abortion legislation at the European Court of Human Rights. 1 The woman was in remission from cancer and believed that she was at increased risk of relapse due to her unintended pregnancy. She believed that continuing with the pregnancy would have put her life at risk. She travelled to England for an abortion in 2005 and subsequently experienced medical complications when she returned to Republic of Ireland. Abortion (...) in the Republic of Ireland is permitted if the life of the pregnant woman is at risk, but given the uncertainty around interpreting the legislation and the fear of criminal sanctions, the provision is not always effective in practice. The woman argued that her right to an abortion had been denied because there was no law or procedure through which she could have her clinical entitlement established. The ECtHR was unanimous that her right to private and family life had been violated but did not uphold her challenge under Articles 2, 3 and 14. The woman was joined by two other women in the challenge but the other women were unsuccessful as their circumstances differed; their lives had not been at risk if they had continued with their pregnancies. 2The Court concluded ‘that neither the medical consultation nor litigation options, relied on by the Irish government, constituted effective and accessible procedures which allowed [her] … to establish her right to lawful abortion in Ireland’.3At the time of writing, the Irish government was considering how to implement the judgement.Review of arm's-length bodiesAs previously reported here, in July 2010 the UK Government announced plans to reform and abolish a large number of arm's-length bodies. 4 …. (shrink)

House of Lords ruling on assisted dyingIn July 2009, the House of Lords ruled that the Director of Public Prosecutions must produce clear guidelines on the prosecution of those who help friends or relatives travel abroad for assisted suicide. 1 As previously reported here, both the High Court and Court of Appeal had rejected Debbie Purdy’s case before it reached the Lords.2 As a person with primary progressive multiple sclerosis, she had asked the court to rule that her husband would (...) not face prosecution if he accompanied her to Switzerland if she decides to end her life. 3By requiring the DPP to publish offence-specific guidelines about the circumstances in which a prosecution would be brought, the law lords did not go so far as to assert a right to assistance in dying by legalising assisted suicide. It was reiterated that any change to the criminal law against aiding and abetting suicide remained a political matter for Parliament. The Lords did, however, acknowledge that the right to privacy, and the associated right to autonomy, was potentially infringed by the absence of a transparent policy about those who are competent and terminally ill, or severely and incurably disabled, and who need help to travel abroad for assisted dying. The five law lords unanimously agreed that Ms Purdy’s right to a private life, as protected by article 8 of the European Convention on Human Rights, included the right to clarity regarding the exercise of the DPP’s discretion as to whether or not to prosecute.Following the Lords’ ruling, the DPP, Keir Starmer, confirmed that the new guidance would apply to all acts of assisted suicide, those taking place within and outside of the jurisdiction.4 He then published an interim policy for wide consultation in September 2009, and is expected to produce the final policy in …. (shrink)

In England, Wales and Scotland, the vast majority of abortions take place in the first trimester of pregnancy. In 2009, for example, 91% of abortions were carried out at under 13 weeks gestation for women resident in England and Wales. 1 Early abortion opens up the opportunity for a woman to have a medical abortion rather than a surgical abortion. Medical abortion is considered to be less invasive and less expensive than surgical abortion, and is increasingly becoming the preferred method. (...) 1 The proportion of medical abortions to surgical abortions has doubled in the last five years with 52% of abortions being medical abortions under 9 weeks gestation in 2009. A medical abortion typically involves taking mifepristone to block the hormones that help a pregnancy to continue, and then later on misoprostol, which makes the womb expel the embryo/fetus, usually within 4–6 h. Current legislation requires that both sets of drugs are administered in an NHS hospital or approved place, but women can go home after taking the second dose of drugs to complete the abortion. There has long been disagreement between the Department of Health and the British Pregnancy Advisory Services about what constitutes ‘any treatment for the termination of pregnancy’ under the Abortion Act 1967, specifically whether a woman taking the second set of drugs is considered to be undergoing the ‘treatment’ and is therefore required to be present in premises permitted under the Act. At the end of 2010, BPAS went to the High Court to challenge the Department of Health's view that the legislation requires women to take both sets of drugs in an approved place. BPAS argued that ‘treatment’ stops at the point of prescription and women should be able to go home, …. (shrink)

On 8 August 2000 conjoined twins, known as Mary and Jodie, were born to Maltese parents at St Mary's Hospital in Manchester. Cases of conjoined twins are rare, affecting around one in every 100,000 live births. Mary and Jodie were joined at the lower abdomen. Jodie, the stronger twin kept Mary alive since Mary's vital organs were too damaged to sustain her. Had she been a singleton, Mary would not have survived. Mary's brain was described as having only primitive function (...) whereas Jodie's appeared normal. They shared Jodie's aorta so that Jodie's heart supplied blood to Mary, which was oxygenated in Jodie's lungs. In sustaining Mary's life, considerable strain was exerted on Jodie's heart which, according to expert opinion, would fail within three to six months, resulting in both their deaths. To withdraw that life-line through separation would inevitably lead to Mary's death but give hope of survival to Jodie. The parents, however, said they could not consent to separation if this would result in Mary's death. The twins were equally precious to their parents who felt that it was “not God's will” for them or anyone to choose death for one. They could not agree to kill one even to save the other. Furthermore, it was uncertain that Jodie would survive surgery. If she did, she would require considerable care and further operations to build a vagina and anus. She might never be able to walk and her parents were uncertain that they would be able to look after her. Doctors sought a declaration from the High Court as to whether the operation was lawful in the light of the parents' refusal to consent.1 The doctors considered that they should try and save one twin rather than allowing both to die. The High Court authorised the doctors to …. (shrink)

Female genital mutilation generates passionate argument about child abuse and the limits of cultural independence. The Sudanese Women's Rights Group (SWRG), which is based in the United Kingdom (UK) issued a press release expressing grave concern about the Sudanese government's intention to legalise female genital mutilation (circumcision) (Sudanese Women's Rights Group press release Legalisation of female circumcision in Sudan, 18 June 2002). The Sudanese Ministry of Religious Affairs and Endowment, together with an Islamic university, held a workshop entitled Towards the (...) Legalisation of Female Circumcision & Establishment of Training Centers for Operators (excisors). It recommended that female circumcision should be legalised, awareness about its importance in society should be raised, and the Islamic University should establish centres all over the country for training practitioners of female circumcision. The SWRG is concerned about the strong support for the recommendations among government officials, in a country where 89% of women have been mutilated.1 The Sudanese government's actions came just a few months before female genital mutilation was rejected at a 190 country strong world summit.2 The summit agreed that health care services must “conform to basic human rights and fundamental freedoms”, a provision designed to prevent female genital mutilation. Around the same time the American embassy in Nairobi said that Somali refugees who had rushed to circumcise their daughters before being moved to the US would probably be barred from emigrating.3 The statement prompted fierce debate, and the US later backtracked.4 Recent debate in the UK focused on taking young girls abroad for mutilation. Nothing in UK law specifically prohibits families from taking daughters abroad for female genital mutilation, but doctors must consider what action they should take to protect a child at risk of being mutilated. The government is exploring ways to strengthen the Prohibition of Female …. (shrink)

In late 2005, the General Medical Council carried out several consultations. In the review of procedures for sick doctors were proposals to strengthen powers to monitor doctors and plans to introduce unannounced drug testing of doctors whose behaviour raised concerns.1 The GMC consultation on the strategic options for undergraduate medical education considered how education is changing in the light of social and clinical demands. It focused, in part, on developing guidance on medical students’ health and conduct and a proposed national (...) registration system for medical students.2 The most significant consultation in terms of medical ethics was the GMC’s review of Good Medical Practice – its main ethical guidance for doctors.3 The GMC’s aim was to re-define practical and attainable modern standards. A proposed draft emphasised partnership in the doctor-patient relationship, human rights, and doctors’ obligations and responsibilities towards children—all of which are issues increasingly significant in medicine. The consultation also opened up discussion on how far the GMC should be concerned about doctors’ behaviour in their private lives. Should it be concerned, for example, about clinically successful consultants being obsessed with hardcore pornography or having affairs with very young women?4 Questions were also posed about how far doctors can exercise a conscientious objection. Should they be able to refuse to refer pregnant women for abortions because they themselves consider it wrong?5 Other potentially contentious issues questioned the extent to which doctors have rights to protect themselves against risks from patients. British Medical Association policy, dating from the era when HIV first began to be diagnosed, stated that it is unethical to withhold treatment solely because a patient’s condition poses risks to doctors’ health. At the time it was adopted, this policy was intended to be anti-discriminatory as HIV patients were already stigmatised. Doctors …. (shrink)

There is growing international debate about the so-called “right to health” and the likely content of such a right as it is gradually defined by international bodies such as the UN committee on economic, social, and cultural rights. Although some countries, such as Mexico, have incorporated the right of access to basic treatment into their national constitution, practical implications generally remain to be fully articulated. Lawyers have been trying to do this by developing internationally accepted indicators which can be used (...) to measure a nation's progress towards compliance with social, economic and cultural rights.1 Clearly, compliance can only be judged against the yardstick of resources. Restructuring of health services and the need to contain spiralling health costs have led many countries to focus on developing a basic health care package as a “right”. The USA, in the Clinton era, had inconclusive discussions about this and basic packages have been implemented by governments as diverse as Brazil, Germany, Israel, and the Netherlands. As the BMA has discussed,2 the prime responsibility for ensuring that rights are fulfilled rests with governments who are signatory to international human rights declarations. Nevertheless, hospitals and other health facilities may logically be deemed to have some obligations, by delegation from government, to respect the rights of people needing urgent treatment. The question of what this right means to health professionals needs exploring. Access to health care, particularly in a life-threatening emergency, appears to be a fundamental component of any such postulated right. Also, individual health professionals are generally perceived as having an ethical duty to respond to “need” when they are able to help. In July 2001, the potential legal consequences of failing to do so were highlighted by a case in India where the medical administrator of a Delhi hospital refused emergency treatment to …. (shrink)