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)

Update on donation of bodily material in the UKIn March 2010, the Human Tissue Authority announced that the first pooled kidney transplants, each involving three living donors and three recipients, had been performed in the UK. 1 While the vast majority of living donor transplants take place between people who are genetically related or are otherwise emotionally close, the Human Tissue Act 2004 introduced greater flexibility, permitting, for example, altruistic, paired and pooled donation. The HTA commented that these types of (...) donation represent one in three of all kidney transplants in the UK. Under the system of paired and pooled donation, in which someone needs a donor organ and has a friend or relative willing to donate, but the two are not compatible with each other, they can pair up with one or more other incompatible donor and recipient pairs in an organ exchange. In paired donation, donor A gives an organ to recipient B and donor B gives to recipient A; in pooled donation, more than two donor–recipient pairs take part in an organ exchange, coordinated by the HTA . Under the human tissue legislation, all cases of paired and pooled donation need to be considered by an independent assessor and approved by a panel of at least three members of the HTA, to ensure that all parties fully understand the risks involved and the donors are not under any pressure to donate.The first pooled transplant took place late in 2009, and was followed shortly afterwards by a second. Several paired living kidney transplants, involving two couples, had already taken place, however, with 16 such transplants going ahead between 1 April 2008 and 31 March 2009. Also in March 2010, a …. (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)

It has been argued that the inherent risks of advance directives made by healthy people are disproportionate to the potential benefits, particularly if the directive is implementable in cases of reversible mental incapacity. This paper maintains that the evidence for such a position is lacking. Furthermore, respect for the principle of autonomy requires that individuals be permitted to make risky choices about their own lives as long as these do not impinge on others. Even though health professionals have an obligation (...) to try and ensure that patients have appropriate information about possible future treatment options, they cannot predict and describe every eventuality but nor can they disregard firm decisions knowingly made on the basis of incomplete information by competent adults. To attempt to do so would be to reinstate notions of medical paternalism which are contrary to current public expectations. (shrink)

The eclectic problem solving methodology used by the British Medical Association is described in this paper. It has grown from the daily need to respond to doctors’ practical queries and incorporates reference to law, traditional professional codes, and established BMA policies—all of which must be regularly assessed against the benchmark of contemporary societal expectations. The two Jehovah’s Witness scenarios are analysed, using this methodology and in both cases the four principles solution is found to concur with that of the BMA’s (...) approach. The author’s overall conclusion is that although the BMA resorts to a lengthier list of thins to consider, the solutions that emerge are often likely to coincide with the four principles approach. (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)

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)