Lucy Frith

This post-holiday edition of the JME brings together a number of papers, covering a range of methodologies, surveys on public opinion, the application of developmental neuroscience, comparative risk/benefit questionnaires, scoping reviews and analysis of guidance and health policy, alongside what might be seen as more traditional medical ethics, analysing concepts and advancing arguments. This range of methodologies is suggestive of the kind of discipline that bioethics has become, and how a wealth of disciplinary and methodological perspectives is needed to address the numerous challenges that face modern health systems. The Editors’ Choice article by Derbyshire and Brockman1 considers the contentious issue of fetal pain, and applies developmental neuroscience to the question of at what stage, if at all, a fetus can feel pain? The authors argue that new evidence suggests we cannot rule out that foetuses might experience pain before 24 weeks. The authors define pain as being ‘a raw experience’ and therefore, ‘the ability to feel pain does not have to be premised on self-reflection, which prevents a rejection of fetal pain because the fetal experience is not equivalent to an adult human experience.’1 Hence, for the authors, pain does not have to be equivalent to adult pain to matter morally. The authors have differing views on abortion and this provokes a thoughtful discussion, in terms of what are the implications of these, although tentative, conclusions on fetal pain for practical approaches to carrying out abortions. They conclude by exploring how abortions might be carried out in a more humane way, that is, using fetal analgesia, and what such a humane approach might look like in light of this new evidence. In this month’s feature article Brick and colleagues2 report on a study that surveyed a sample of the UK population on their views on allowing …

In their paper Hortonet alargue that it is acceptable to contact an anonymous egg-donor to facilitate diagnostic genetic testing for the donor conceived child, despite the donor, ‘indicating on a historical consent form that she did not wish to take part in future research, and that she did not wish to be informed if she was found to be a carrier of a “harmful inherited condition”’. There are a number of claims embedded in Hortonet al’s position that it is acceptable to contact the donor and request that she at least think about participating in genetic testing. In this response. I will go through their main claims and argue that the area of genomic medicine does not justify exceptions to general consent conditions as the authors suppose and conclude that the donor should not be contacted. I will then go on to suggest a policy change that would address Hortonet al’s concerns but would not involve over-riding any previously expressed wishes.

This paper examines a legal case arising from a workplace grievance that progressed to being heard at the UK’s Supreme Court. The case of Doogan and Wood versus Greater Glasgow and Clyde Health Board concerned two senior midwives in Scotland, both practicing Roman Catholics, who exercised their perceived rights in accordance with section 4 of the Abortion Act not to participate in the treatment of women undergoing abortions. The key question raised by this case was: “Is Greater Glasgow and Clyde Health Board entitled to require the midwives to delegate, supervise and support staff in the treatment of patients undergoing termination of pregnancy?” The ethical issues concerning conscientious objection to abortion have been much debated although the academic literature is mainly concerned with the position of medical practitioners rather than what the World Health Organization terms “mid-level professionals” such as midwives. This paper examines the arguments put forward by the midwives to justify their refusal to carry out tasks they felt contravened their legal right to make a conscientious objection. We then consider professional codes, UK legislation and church legislation. While the former are given strong weighting the latter was been ignored in this case, although cases in other European countries have been prevented from escalating to such a high level by the intervention of prominent church figures. The paper concludes by stating that the question put to the courts remains as yet unanswered but offers some recommendations for future policy making and research.

This issue of the Journal of Medical covers a range of ethical issues and care settings making the task of beginning to summarise these papers challenging. They reflect the diversity of our field, representing different branches of bioethics focussing on specific areas or topics using a variety of methodologies: but how do we categorise these branches of bioethics? What demarks one branch from another? And what function do such categorisations fulfil? From the early days of medical ethics we now have a growing proliferation of different branches, from those with a more specific focus: clinical ethics, global ethics, nursing ethics, public health ethics for example, to a widening out, in terms of bioethics becoming the broader usage and medical ethics sitting within that. More recently, a new area of ethical focus has arisen, One Health, the subject of Johnson and Degeling’s article in this issue. They define One Health as follows: ‘One Health is generally construed as an integrated approach to understanding and managing disease. Although primarily associated with the prevention and control of Emerging Infectious Diseases, the approach is also relevant to dealing with endemic and zoonotic animal diseases, as well as securing food safety. In its most comprehensive form, it extends to fostering the health of humans, animals and their shared environments.’ This raises, in many ways, a different set of ethical concerns from those usually encountered in bioethics and medical ethics and this leads Johnson and Degeling to ask whether One Health merits having its own ‘ethical framework’. They use ethical frameworks in two senses: as value neutral deliberative tools and as embodying values, and consider how each usage could be applied in One Health. In terms of the first usage they state: ‘When ethical frameworks are regarded as a procedural tool then, the One Health perspective can broaden …

This article discusses when it is ethically acceptable to withdraw consent for the storage and use of embryos and gametes. Currently, the law in the UK states that consent to use of a gamete or embryo can be withdrawn up to the point of the embryo's transfer to the recipient's uterus or when the gamete is used in providing treatment services; that is, the ‘point of no return’. In this article, we will consider other points of no return and argue that having a single point of no return, a one size fits all form of consent can, in some cases, lead to restrictions on individuals’ autonomy and cause particular types of harm. Therefore, having different points of no return that fit different circumstances could extend autonomy and allow people to enter into agreements that are tailored more to their own particular needs and circumstances.

This paper will critically examine the use of evidence in creating policy in the area of reproductive technologies. The use of evidence in health care and policy is not a new phenomenon. However, codified strategies for evidence appraisal in health care technology assessments and attempts to create evidence based policy initiatives suggest that the way evidence is used in practice and policy has changed. This paper will examine this trend by considering what is counted as ‘good’ evidence, difficulties in translating evidence into policy and practice and how evidence interacts with principles. To illustrate these points the removal of gamete donor anonymity in the UK in 2005 and the debates that preceded this change in the law will be examined. It will be argued that evidence will only ever take us so far and attention should also be paid to the underlying principles that guide policy. The paper will conclude with suggestions for how underlying principles can be more rigorously used in policy formation.

Freedom of conscience is a core element of human rights respected by most European countries. It allows abortion through the inclusion of a conscience clause, which permits opting out of providing such services. However, the grounds for invoking conscientious objection lack clarity. Our aim in this paper is to take a step in this direction by carrying out a systematic review of reasons by midwives and nurses for declining, on conscience grounds, to participate in abortion. We conducted a systematic review of ethical arguments asking, “What reasons have been reported in the argument based literature for or against conscientious objection to abortion provision by nurses or midwives?” We particularly wanted to identify any discussion of the responsibilities of midwives and nurses in this area. Search terms were conscientious objection and abortion or termination and nurse or midwife or midwives or physicians or doctors or medics within the dates 2000–2016 on: HEIN legal, Medline, CINAHL, Psychinfo, Academic Search Complete, Web of Science including publications in English, German and Dutch. Final articles were subjected to a rigorous analysis, coding and classifying each line into reason mentions, narrow and broad reasons for or against conscientious objection. Of an initial 1085 articles, 10 were included. We identified 23 broad reasons, containing 116narrow reasons and 269 reason mentions. Eighty one narrow reasons argued in favour of and 35 against conscientious objection. Using predetermined categories of moral, practical, religious or legal reasons, “moral reasons” contained the largest number of narrow reasons. The reasons and their associated mentions in this category outnumber those in the sum of the other three categories. We identified no absolute argument either for or against conscientious objection by midwives or nurses. An invisibility of midwives and nurses exists in the whole debate concerning conscientious objection reflecting a gap between literature and practice, as it is they whom WHO recommend as providers of this service. While the arguments in the literature emphasize the need for provision of conscientious objection, a balanced debate is necessary in this field, which includes all relevant health professionals.

It is nearly 20 years since Tony Hope wrote an editorial in this journal on Empirical Medical Ethics,1 arguing for both a recognition of the increasing amount of work being done in ‘empirical ethics’ and for its importance as a new direction for medical ethics research. Since then empirical ethics has flourished, with debates over the role of ‘empirical’ data in ethical reasoning producing a growing body of literature and the JME and other bioethics journals regularly publishing empirical studies. While bio/medical ethics has grappled with ‘incorporating’ or using more empirical data in ethical analysis, with varying degrees of success, and some criticism, there has not been a corresponding willingness of more empirical disciplines to embrace ethical analysis. This is a particular lack for applied research areas that see their role as predominately influencing policy and practice, such as health services research. Health services research ‘is the integration of epidemiological, sociological, economic, and other analytic sciences in the study of health services.’ Whose ‘main goals … are to identify the most effective ways to organize, manage, finance, and deliver high quality care; reduce medical errors; and improve patient safety’.2 Health services research brings together a wide variety of disciplines and would seem ideally placed to include ethics. However, if you search health services research journals and conference programmes there is very little consideration of ethics as a substantive topic and often scant attention paid to the ethical issues that might be raised by an intervention or policy. Ethics and ethical issues are generally confined to discussions over priority setting, and occasionally health technology assessment, with other areas of health service research seldom engaging in ethical debate. In the Encyclopaedia of Health Services Research,3 ethics …

Infertility treatment is a speciality that has attracted considerable attention both from the public and bioethicists. The focus of this attention has mainly been on the dramatic dilemmas created by theses technologies. Relatively little is known, however, about how clinicians approach and resolve ethical issues on an everyday basis. The central aim of this study is to gain insight into these neglected aspects of practice. It was found that, for the clinicians, the process by which ethical decisions were made was of key importance. It will be argued that this focus on the process of decision-making is more than just empty proceduralism but is based on and facilitates certain substantive ethical principles. In conclusion, suggestions as to how ethical decision-making processes can be supported and improved in infertility practice will be made.

Life Choices is the second edition of a collection of “some of the very best articles published in the Hastings Center Report over the last 28 years”. The collection has two main aims: to provide a challenging text for classrooms and to serve as a testimony to the achievements of the Hastings Center. The first edition was published in 1994 to mark the 25th anniversary of the Hastings Center's foundation. The Hastings Center, based in New York state, is the oldest independent, non-partisan interdisciplinary research institute of its kind in the world and has become a highly influential organisation. The center's mission is the study of the moral problems that arise out of the rapid advances in medicine and biology, and collaboration with policy makers, both in the private and public sphere, to aid the analysis of the ethical dimension of their work. The collection is organised around themes which reflect the center's research …

This is very much a workbook rather than a conventional textbook in that it presents readers with cases and, through structured activities, aims to facilitate the understanding of key topics in medical ethics. As the authors state: “The workbook is intended to be both a coherent approach to medical ethics and also a toolkit of resources for teachers and lecturers”. The book is organised around themes, such as reproduction, genetic testing, medical research, and mental health. In their choice of topics the authors say they aim to focus more heavily on ordinary cases rather than “headline” issues so that the cases will be of relevance to health care professionals’ everyday practice. The chapters begin with the presentation of a case which is followed by commentaries and short articles elaborating on the issues raised. Activity boxes appear throughout the text to encourage the reader to critically engage with the cases and commentaries. The cases …

The NHS in England is an organisation undergoing substantial change. The passage of the Health and Social Care Act 2012, consolidates and builds on previous health policies and introduces further ‘market-style’ reforms of the NHS. One of the main aspects of these reforms is to encourage private and third sector providers to deliver NHS services. The rationale for this is to foster a more competitive market in healthcare to encourage greater efficiency and innovation. This changing healthcare environment in the English NHS sharpens the need for attention to be paid to the ethical operation of healthcare organisations. All healthcare organisations need to consider the ethical aspects of their operation, whether state or privately run. However, the changes in the type of organisations used to provide healthcare (such as commercial companies) can create new relationships and ethical tensions. This paper will chart the development of organisational ethics as a concern in applied ethics and how it arose in the USA largely owing to changes in the organisation of healthcare financing and provision. It will be argued that an analogous transition is happening in the NHS in England. The paper will conclude with suggestions for the development of organisational ethics programmes to address some of the possible ethical issues raised by this new healthcare environment that incorporates both private and public sector providers

This paper examines the role of clinical ethics committees (CECs) in infertility clinics in the UK, focusing on whether they usefully support infertility clinicians' ethical decision-making. The overall aim of the study reported here was to investigate how infertility clinicians approached and handled ethical problems in their everyday practice and this paper reports on one aspect of these data – what they thought about the use of CECs. This paper gives an overview of what arrangements there are for such committees in infertility clinics; considers why the clinicians used CECs; and examines how these committees provided a useful function in the infertility setting and contributed to making ‘good’ ethical decisions. Finally, the paper examines how the form of ethics support can be developed and strengthened, and concludes with recommendations for a particular model of CECs in infertility units – a designated CEC for each infertility unit

People should be allowed to decide how and where they wish to be tested for HIV without there being a formal requirement for pretest counsellingIn his paper, Ethics of HIV testing in general practice without informed consent, Fraser argues that pretest counselling and informed consent are pillars of the ethical conduct of HIV testing. In my response I want to look critically at these contentions. While I will agree with Fraser that it is always necessary to get informed consent from a patient for an HIV test I will argue that an emphasis on pretest counselling as a prerequisite for testing can actually undermine a patient’s autonomy, the very principle that informed consent seeks to promote.This response will start with an analysis of Case Two as this highlights the fundamental importance of informed consent. It will then go on to look at Case One and show how the special application of informed consent in the field of HIV testing can, in certain circumstances, lead to a reduction in patient autonomy.CASE TWOIn Fraser’s second case a 43 year old married clergyman presented with a recurrent infection of his little toe and the preliminary lab reports queried Kaposi’s sarcoma. The general practitioner thought that because of the patient’s lifestyle there was little risk of HIV infection, “suggesting the possibility of HIV, when it is unexpected and the risk low, can in itself cause anxiety and distress”. On these grounds the GP did not call the patient in for an HIV test.Some might argue that the GP should have tested the clergyman. This could have been done in one of two ways: by seeking his explicit consent for an HIV test, or by getting blanket consent for a range of tests, including HIV, without HIV being explicitly mentioned. …

This is very much a workbook rather than a conventional textbook in that it presents readers with cases and, through structured activities, aims to facilitate the understanding of key topics in medical ethics. As the authors state: “The workbook is intended to be both a coherent approach to medical ethics and also a toolkit of resources for teachers and lecturers”. The book is organised around themes, such as reproduction, genetic testing, medical research, and mental health. In their choice of topics the authors say they aim to focus more heavily on ordinary cases rather than “headline” issues so that the cases will be of relevance to health care professionals’ everyday practice. The chapters begin with the presentation of a case which is followed by commentaries and short articles elaborating on the issues raised. Activity boxes appear throughout the text to encourage the reader to critically engage with the cases and commentaries. The cases …

There are substantial numbers of frozen embryos in storage that will not be used by those who produced them for their own fertility treatment. One option for such embryos is to donate them to others to use in their fertility treatment. There has been considerable debate about how this process should be organized. In the US, there are embryo adoption programmes that mediate between those relinquishing embryos and potential recipients. This is a form of conditional embryo donation, where the relinquishing couple can choose the recipient of their embryo. This article examines the ethical debate over conditional embryo donation for family building and explores the question of whether those who have unused frozen embryos should be able to determine who receives their embryos. The main objections to conditional embryo donation are examined: first, the embryo is not a person and therefore such concern over the placement of an embryo is unwarranted; secondly, potential donors might impose morally problematic conditions on who should receive their embryo; and thirdly, there are practical difficulties regarding organizational arrangements and the associated costs involved. It will be concluded that these objections can be countered and that if people wish to donate and receive embryos in this way there is no ethical objection to them doing so

The purpose of this paper is to consider the role that values play in priority setting through the use of EBP. It is important to be clear about the role of values at all levels of the decision making process. At one level, society as a whole has to make decisions about the kind of health provision that it wants. As is generally accepted, these priority setting questions cannot be answered by medical science alone but involve important judgements of value. However, as I hope to show values come into priority setting questions at another level, one not often explicitly recognised in much of the literature: that of the very definition of the effectiveness of treatments. This has important consequences for patient care. If we do not recognise that the effectiveness of a treatment involve subjective elements — a patient's own assessment of the value of the treatment — then this could lead to the belief that we can purchase one treatment that is the most effective for all patients. This might result in a detrimental reduction in the range of options that a patient is given with some patients not receiving the treatment that is most effective for them

The use of rights based arguments to justify claims that donor offspring should have access to information identifying their gamete donor has become increasingly widespread. In this paper, I do not intend to revisit the debate about the validity of such rights. Rather, the purpose is to examine the way that such alleged rights have been implemented by those legislatures that have allowed access to identifying information. I will argue that serious inconsistencies exist between the claim that donor offspring have a right to know the identity of their gamete donor and the way such a right is currently met in practice. I hope to show that in systems where non‐anonymous donation is practised, an understanding of the proclaimed right of donor offspring to know their genetic identity is one composed of two different rights – the right to know the circumstances of their conception and the right to information identifying the gamete donor – can provide important insights into this important area of public policy.

Like any discipline, bioethics is a developing field of academic inquiry; and recent trends in scholarship have been towards more engagement with empirical research. This ‘empirical turn’ has provoked extensive debate over how such ‘descriptive’ research carried out in the social sciences contributes to the distinctively normative aspect of bioethics. This paper will address this issue by developing a practical research methodology for the inclusion of data from social science studies into ethical deliberation. This methodology will be based on a naturalistic conception of ethical theory that sees practice as informing theory just as theory informs practice – the two are symbiotically related. From this engagement with practice, the ways that such theories need to be extended and developed can be determined. This is a practical methodology for integrating theory and practice that can be used in empirical studies, one that uses ethical theory both to explore the data and to draw normative conclusions