Lucy Frith

Community engagement (CE) contributes to successful research. There is, however, a lack of literature on the effectiveness of different models of CE and, specifically, on CE strategies for the conduct of genomic research in sub-Saharan Africa. There is also a need for models of CE that transcend the recruitment stage of engaging prospective individuals and communities and embed CE throughout the research process and after the research has concluded. The qualitative study reported here was designed to address these knowledge gaps and comprised of 36 key informant semi-structured interviews and fifteen focus groups with 50 participants. We interviewed selected stakeholders in genomic research in Nigeria: biomedical researchers, community rulers, opinion leaders, community health workers, and prospective research participants. We explored these stakeholders’ views on their understanding of community engagement, their expectations, experiences, and their opinions on acceptable processes of community consultation in genomic research. The methodological design, adapted from grounded theory, used the constant comparative method of data analysis; while normative conclusions were made using the symbiotic empirical ethics approach. Data analysis revealed five main themes important for successfully engaging communities in genomic research: effective communication, diversity of community gatekeeping, trust, cultural integration of research, and conservation of the research setting. From these themes, we have developed a four-stage model of community engagement that covers all stages of the research process; namely, the Community Approach, Intermediate phase, Collaboration and Post-research Cordiality model (CICP). This model could be used to improve the integration of CE in genomic research among local communities.

Labioplasty is a surgical procedure performed to alter the size and shape of the labia minora. The reasons for women requesting this procedure remain largely unknown and recently girls and young women under the age of 18 years have been requesting this type of surgery. This paper examines the ethical acceptability of performing this procedure on under 18s. We will first discuss whether labioplasty can be considered to be a therapeutic technique. We will claim that, while it is difficult to offer a definitive definition of what constitutes a therapeutic technique, in our view labioplasty cannot be considered as such. This conclusion has relevance for the ethical acceptability of the procedure, its legal status in regard to the Female Genital Mutilation Act and the debates over who can give consent for it. It will be concluded that in our current state of knowledge, the benefits of labioplasty are far from clear, whereas the harms are demonstrable and therefore this procedure should not be offered to those aged under 18 years

The JME editorial team selects its feature articles from the best papers accepted for publication based on their quality, novelty and capacity to move debate forward on a specific issue. Feature articles are made freely available and are published alongside reviewed and submitted commentaries. We do this partly to promote and acknowledge excellent work in medical ethics, but also to encourage authors to submit their best papers to the JME. JME feature articles have deepened the analysis of some central issues for medical ethics. ‘Common morality’ is one way of underpinning general ethical principles and it is a concept that is central to the justification that Beauchamp and Childress give in their classic articulation of the four principles. 1 Rhodes’ critical discussion of common morality in her feature article 2 has been well cited since then, which is a good thing from the perspective of the author...

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.

The literature on patient public involvement and engagement (PPIE) in health research has grown significantly in the last decade, with a diverse range of definitions and topologies promulgated. This has led to disputes over what the central functions and purpose of PPIE in health research is, and this in turn makes it difficult to assess and evaluate PPIE in practice. This paper argues that the most important function of PPIE is the attempt to make health research more democratic. Bringing this function to the fore and locating PPIE in the wider context of changes in contemporary forms of democratic engagement provides greater conceptual clarity over what PPIE in research should be trying to achieve. Conceptualizing PPIE as a form of democratization has a number of benefits. First, theories of what are appropriate, normatively justifiable and workable criteria for PPIE practices can be developed, and this can provide tools to address the legitimacy and accountability questions that have troubled the PPIE community. Second, this work can be used to form the basis of a research agenda to investigate how PPIE in health research operates, and how it can facilitate and/or improve democratic processes in health research.

In their paper Horton et al argue 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 Horton et 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 Horton et al’s concerns but would not involve over-riding any previously expressed wishes.

This paper will take as its starting point the premise that developing translational bioethics is a worthwhile endeavour. I will develop an account of translational bioethics and discuss what implications this would have for the wider discipline of bioethics and argue that this would be a useful development for bioethics. The paper will conduct a form of ‘translational meta‐bioethics analysis’, in the words of Bærøe. I will argue that if we are serious about instituting translational bioethics, then it will need to look and be organised in a very different way from current bioethics research, this will be a radically different form of bioethics from what we currently have. In this paper I will sketch what translational bioethics might look like. My proposal here is not that translational bioethics should supplant existing ways of doing bioethics, but rather that it should be an addition to it, another subdiscipline of bioethics.

Community engagement (CE) contributes to successful research. There is, however, a lack of literature on the effectiveness of different models of CE and, specifically, on CE strategies for the conduct of genomic research in sub-Saharan Africa. There is also a need for models of CE that transcend the recruitment stage of engaging prospective individuals and communities and embed CE throughout the research process and after the research has concluded. The qualitative study reported here was designed to address these knowledge gaps and comprised of 36 key informant semi-structured interviews and fifteen focus groups with 50 participants. We interviewed selected stakeholders in genomic research in Nigeria: biomedical researchers, community rulers, opinion leaders, community health workers, and prospective research participants. We explored these stakeholders’ views on their understanding of community engagement, their expectations, experiences, and their opinions on acceptable processes of community consultation in genomic research. The methodological design, adapted from grounded theory, used the constant comparative method of data analysis; while normative conclusions were made using the symbiotic empirical ethics approach. Data analysis revealed five main themes important for successfully engaging communities in genomic research: effective communication, diversity of community gatekeeping, trust, cultural integration of research, and conservation of the research setting. From these themes, we have developed a four-stage model of community engagement that covers all stages of the research process; namely, the Community Approach, Intermediate phase, Collaboration and Post-research Cordiality model (CICP). This model could be used to improve the integration of CE in genomic research among local communities.

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.

Arguably one of the strengths of the discipline of medical ethics is its close attention to the context in which ethical dilemmas, questions and issues play out. As a discipline that is concerned with helping and supporting practitioners, policy-makers and the public to address the ethical aspects of healthcare provision and practice in the best way they can, context is crucially important. As McMillian puts it, ‘ethics should be grounded’ in the practical realities of the situation.1 What, where and who are important questions that set the parameters of the debate and, to some extent, frame the subsequent solution or decision. What is happening in a particular case, what is the source of controversy, is it a conflict of values, regulations or professional viewpoints? Where does it take place, under which rules, jurisdiction or in which professional setting? And who does it involve? Whose rights, interests or decision-making capacity do we prioritise? All these contextual questions need to be carefully articulated before it is possible to draw any normative conclusions. The importance of context is clear in this issue’s ‘Engagement without entanglement: a framework for non-sexual patient–physician boundaries’ by Appel.2 What might be seen as entirely appropriate behaviour in one context, for example, when I help out a friend and let them stay in my house for a few weeks while they recover from an operation, is entirely inappropriate in another—in …

Choice is probably one of the most often discussed areas in bioethics, alongside the related concepts of informed consent and autonomy. It is generally, prima facie, portrayed as a good thing. In healthcare, the 2000s saw the UK Prime Minister Tony Blair pursue the ‘Choice Agenda’ where, ‘As capacity expands, so choice will grow. Choice will fundamentally change the balance of power in the NHS.’1 In a consumerist society giving consumers more choice is seen as desirable. However, choice is not a good in itself, giving people more choice in certain situations can be problematic: i.e. consumerism drives economic growth and this has a detrimental effect on the environment; and increasing the range of choices a patient is offered is often not the best way to improve the quality of healthcare provision.2 The assumptions behind the valuing of choice need careful unpacking and this Issue of the Journal of Medical Ethics includes papers that explore choice in a number of areas. This Issue's Editor’s choice is Tom Walker’s ‘The Value of Choice’,3 which puts forward a suggestion for the importance of the symbolic value of choice. There are a number of ways of categorising the value of choice in healthcare. One account sees choice as valuable because it is by choosing that individuals make their life their own. Another account sees choice as valuable for instrumental reasons, people are generally, assuming they are sufficiently informed, the best judge of their own best interests. Walker argues for an additional third reason, the symbolic value of choice, originally proposed by Scanlon. This sees choice as valuable because being given the option to choose, whether or not one takes it up, not the act of choosing is what makes choice valuable. Being offered the option to choose has a …

Community engagement (CE) contributes to successful research. There is, however, a lack of literature on the effectiveness of different models of CE and, specifically, on CE strategies for the conduct of genomic research in sub-Saharan Africa. There is also a need for models of CE that transcend the recruitment stage of engaging prospective individuals and communities and embed CE throughout the research process and after the research has concluded. The qualitative study reported here was designed to address these knowledge gaps and comprised of 36 key informant semi-structured interviews and fifteen focus groups with 50 participants. We interviewed selected stakeholders in genomic research in Nigeria: biomedical researchers, community rulers, opinion leaders, community health workers, and prospective research participants. We explored these stakeholders’ views on their understanding of community engagement, their expectations, experiences, and their opinions on acceptable processes of community consultation in genomic research. The methodological design, adapted from grounded theory, used the constant comparative method of data analysis; while normative conclusions were made using the symbiotic empirical ethics approach. Data analysis revealed five main themes important for successfully engaging communities in genomic research: effective communication, diversity of community gatekeeping, trust, cultural integration of research, and conservation of the research setting. From these themes, we have developed a four-stage model of community engagement that covers all stages of the research process; namely, the Community Approach, Intermediate phase, Collaboration and Post-research Cordiality model (CICP). This model could be used to improve the integration of CE in genomic research among local communities.

Community engagement (CE) contributes to successful research. There is, however, a lack of literature on the effectiveness of different models of CE and, specifically, on CE strategies for the conduct of genomic research in sub-Saharan Africa. There is also a need for models of CE that transcend the recruitment stage of engaging prospective individuals and communities and embed CE throughout the research process and after the research has concluded. The qualitative study reported here was designed to address these knowledge gaps and comprised of 36 key informant semi-structured interviews and fifteen focus groups with 50 participants. We interviewed selected stakeholders in genomic research in Nigeria: biomedical researchers, community rulers, opinion leaders, community health workers, and prospective research participants. We explored these stakeholders’ views on their understanding of community engagement, their expectations, experiences, and their opinions on acceptable processes of community consultation in genomic research. The methodological design, adapted from grounded theory, used the constant comparative method of data analysis; while normative conclusions were made using the symbiotic empirical ethics approach. Data analysis revealed five main themes important for successfully engaging communities in genomic research: effective communication, diversity of community gatekeeping, trust, cultural integration of research, and conservation of the research setting. From these themes, we have developed a four-stage model of community engagement that covers all stages of the research process; namely, the Community Approach, Intermediate phase, Collaboration and Post-research Cordiality model (CICP). This model could be used to improve the integration of CE in genomic research among local communities.