Rosamund Scott

Choosing embryos: ethical complexity and relational autonomy in staff accounts of PGD

The technique of preimplantation genetic diagnosis (PGD) is commonly explained as a way of checking the genes of embryos produced by IVF for serious genetic diseases. However, complex accounts of this technique emerged during ethics discussion groups held for PGD staff. These form part of a study exploring the social processes, meanings and institutions that frame and produce ‘ethical problems’ for practitioners, scientists and others working in the specialty of PGD in the UK. Two ‘grey areas’ raised by staff are discussed in terms of how far staff are, or in the future may be, able to support autonomous choices of women/couples: accepting ‘carrier’ embryos within the goal of creating a ‘healthy’ child; and sex selection of embryos for social reasons. These grey areas challenged the staffs resolve to offer individual informed choice, in the face of their awareness of possible collective social effects that might ensue from individual choices. We therefore argue that these new forms of choice pose a challenge to conventional models of individual autonomy used in UK genetic and reproductive counselling, and that ‘relational autonomy’ may be a more suitable ethical model to describe the ethical principles being drawn on by staff working in this area.

DONATION OF ‘SPARE’ FRESH OR FROZEN EMBRYOS TO RESEARCH: WHO DECIDES THAT AN EMBRYO IS ‘SPARE’ AND HOW CAN WE ENHANCE THE QUALITY AND PROTECT THE VALIDITY OF CONSENT?

This paper analyses elements of the legal process of consent to the donation of ‘spare’ embryos to research, including stem-cell research, and makes a recommendation intended to enhance the quality of that process, including on occasion by guarding against the invalidity of such consent. This is important in its own right and also so as to maximise the reproductive treatment options of couples engaged in in vitro fertilisation (IVF) treatment and to avoid possible harms to them. In Part 1, with reference to qualitative data from three UK IVF clinics, we explore the often delicate and contingent nature of what comes to be, for legal purposes, a ‘spare’ embryo. The way in which an embryo becomes ‘spare’, with its implications for the process of consent to donation to research, is not addressed in the relevant reports relating to or codes of practice governing the donation of embryos to research, which assume an unproblematic notion of the ‘spare’ embryo. Significantly, our analysis demonstrates that there is an important and previously unrecognised first stage in the donation of a ‘spare’ embryo to research, namely: consent to an embryo being ‘spare’ and so, at the same time, to its disuse in treatment. This is not explicitly covered by the Human Fertilisation and Embryology (HFE) Act 1990, as amended by the HFE Act 2008. Having identified this important initial stage in the process of consent to the donation of a ‘spare’ embryo to research in conclusion to Part 1, in Part 2 we analyse the idea of consent to an embryos disuse in treatment on the basis that it is ‘spare’ with reference to the legal elements of consent, namely information as to nature and purpose, capacity, and voluntariness. We argue that there are in fact three related consent processes in play, of which the principal one concerns consent to an embryos disuse in treatment. If the quality of this first consent is compromised, in turn this will impact on the quality of the consent to the donation of that ‘spare’ embryo to research, followed by the quality of consent to future cycles of assisted reproduction treatment in the event that these are needed as a result of a donation decision. The analysis overall is of central relevance to the debate as to whether, and if so when, it should be permissible to request the donation of fresh embryos for research, as opposed to those that have been frozen and, for instance, have reached the end of their statutory storage term. This has a particular bearing on the donation of embryos to stem-cell research since there is a debate as to whether fresh embryos are most useful for this.

Embryo futures and stem cell research: the management of informed uncertainty

In the social worlds of assisted conception and stem cell science, uncertainties proliferate and particular framings of the future may be highly strategic. In this article we explore meanings and articulations of the future using data from our study of ethical and social issues implicated by the donation of embryos to human embryonic stem cell research in three linked assisted conception units and stem cell laboratories in the UK. Framings of the future in this field inform the professional management of uncertainty and we explore some of the tensions this involves in practice. The bifurcation of choices for donating embryos into accepting informed uncertainty or not donating at all was identified through the research process of interviews and ethics discussion groups. Professional staff accounts in this study contained moral orientations that valued ideas such as engendering patient trust by offering full information, the sense of collective ownership of the National Heath Service and publicly funded science and ideas for how donors might be able to give restricted consent as a third option.

Regulating reproductive donation

The emergence of new empirical evidence and ethical debate about families created by assisted reproduction has called into question the current regulatory frameworks that govern reproductive donation in many countries. In this multidisciplinary book, social scientists, ethicists and lawyers offer fresh perspectives on the current challenges facing the regulation of reproductive donation, and suggest possible ways forward. They address questions such as: what might people want to know about the circumstances of their conception? Should we limit the number of children donors can produce? Is it wrong to pay donors or to reward them with cut-price fertility treatments? Is overseas surrogacy exploitative of women from poor communities? Combining the latest empirical research with analysis of ethics, policy and legislation, the book focuses on the regulation of gamete and embryo donation and surrogacy at a time when more people are considering assisted reproduction and when new techniques and policies are underway.

Reconsidering 'Wrongful Life' in England after Thirty Years: Legislative Mistakes and Unjustifiable Anomalies

Under English law a child born disabled, for instance by Tay Sachs disease, as a result of negligent embryo selection by preimplantation genetic diagnosis (‘PGD’), can sue the relevant health professionals by means of a 1990 amendment to the Congenital Disabilities (Civil Liability) (‘CD’) Act 1976. By contrast, a second child conceived outside the in vitro fertilisation (‘IVF’) clinic, whose Tay Sachs is not detected in utero by means of prenatal diagnosis, can have no claim against the relevant health professionals due to the decision in McKay and Another v Essex Area Health Authority, which held that a child can have no claim for so-called “wrongful life”. This paper argues that this difference is anomalous and inequitable. It highlights the inadvertent way in which the legislative exception was crafted and shows that there are no relevant differences between the selection practices of PGD and PND that would in any event justify such different treatment. It critiques the English common law position on wrongful life by analysing the ethical and legal foundations of such a claim, arguing that the action should be permitted on the basis of a certain degree of severity, namely where a future child is likely to think that his or her life is not worth living. The analysis makes particular reference to developments since McKay in the law relating to the selective non-treatment of neonates, selective abortion, wrongful birth, and the action for wrongful life itself, as well as to the legal position of pregnant women in relation to the fetus, and the critique by people with disabilities of the practices of PGD and PND. The paper argues that McKay and those parts of the CD Act that purport to deny a claim for wrongful life to children born outside the IVF context should be revisited when the opportunity arises. The duty that health professionals already owe prospective parents to advise of a condition in a developing fetus that would give rise to serious impairments in the future child (which sounds in an action for so-called “wrongful birth”) should be owed at the same time to the future child, realised by advice to the pregnant woman, where a child is likely to be born with a condition that is so severe that any goods in life are outweighed by the burdens.

Reproductive Health: Morals, Margins and Rights: Reproductive Health

Reproductive interventions and technologies have the capacity to generate profound societal unease and to provoke hostile reactions underpinned by various moral concerns. This paper shows that this position currently goes relatively unchecked by the European Court of Human Rights, which allows the margin of appreciation and consensus doctrines significantly to limit the scope of reproductive rights under the right to respect for private and family life under Article 8. This occurs both in relation to the interest in avoiding reproduction at stake in abortion, and that in achieving it at stake in medically assisted reproduction. The paper demonstrates significant flaws in the Court’s framing and deployment of these doctrines in its reproductive jurisprudence. It argues that, as regards existing and upcoming reproductive interventions and technologies, the Court should attend to the concept of reproductive health, long recognised in international conventions and policy materials.

Germline Genetic Modification and Identity : the Mitochondrial and Nuclear Genomes

Abstract In a legal ‘first’, the UK removed a prohibition against modifying embryos in human reproduction, to enable mitochondrial replacement techniques (MRTs), a move the Government distanced from ‘germline genetic modification’, which it aligned with modifying the nuclear genome. This paper (1) analyzes the uses and meanings of this term in UK/US legal and policy debates; and (2) evaluates related ethical concerns about identity. It shows that, with respect to identity, MRTs and nuclear genome editing techniques such as CRISPR/Cas-9 (now a policy topic), are not as different as has been supposed. While it does not follow that the two should be treated exactly alike, one of the central reasons offered for treating MRTs more permissively than nuclear genetic modification, and for not regarding MRTs as ‘germline genetic modification’, is thereby in doubt. Identity cannot, by itself, do the work thus far assigned to it, explicitly or otherwise, in law and policy.

Pioneering Healthcare Law: Essays in Honour of Margaret Brazier

Margaret Brazier has been described as one whose work ‘light[s] the way’1 for those that follow, the ‘paradigmatic female role model for young academics’2, and as a ‘lawyer, whose heart is in the law’.3 We agree and argue that Brazier has a distinctive way of both analysing legal issues and evaluating legal problems. This chapter identifies and examines the distinctive elements of the Brazier method. Drawing on this method, and a case study, we argue that she has made a fundamental contribution to the development of healthcare law. Brazier has highlighted the importance of recognising the humanity of different stakeholders in the healthcare enterprise. Particularly important is her recognition of the fallibility and vulnerability of healthcare professionals alongside patients. Where previously medical law was a tool for confrontation between human patients and machine-like doctors, Brazier has facilitated its evolution into a new role as mediator between fallible and vulnerable players.This book celebrates Professor Margaret Braziers outstanding contribution to the field of healthcare law and bioethics. It examines key aspects developed in Professor Braziers agenda-setting body of work, with contributions being provide by leading experts in the field from the UK, Australia, the US and continental Europe. They examine a range of current and future challenges for healthcare law and bioethics, representing state-of-the-art scholarship in the field.

Donor conception and information disclosure: Welfare or consent?

Margaret Brazier has been described as one whose work ‘light[s] the way’1 for those that follow, the ‘paradigmatic female role model for young academics’2, and as a ‘lawyer, whose heart is in the law’.3 We agree and argue that Brazier has a distinctive way of both analysing legal issues and evaluating legal problems. This chapter identifies and examines the distinctive elements of the Brazier method. Drawing on this method, and a case study, we argue that she has made a fundamental contribution to the development of healthcare law. Brazier has highlighted the importance of recognising the humanity of different stakeholders in the healthcare enterprise. Particularly important is her recognition of the fallibility and vulnerability of healthcare professionals alongside patients. Where previously medical law was a tool for confrontation between human patients and machine-like doctors, Brazier has facilitated its evolution into a new role as mediator between fallible and vulnerable players.This book celebrates Professor Margaret Braziers outstanding contribution to the field of healthcare law and bioethics. It examines key aspects developed in Professor Braziers agenda-setting body of work, with contributions being provide by leading experts in the field from the UK, Australia, the US and continental Europe. They examine a range of current and future challenges for healthcare law and bioethics, representing state-of-the-art scholarship in the field.