Gaining ethical approvals to undertake sexual health research with young people in the UK: Applying a 'Children's Rights Based Approach'

This paper (co-written with Dr Maria Lohan, Dr Carmel Kelly & Professor Laura Lundy) will describe the ethical review process to undertake health research in the UK, and explain an approach that can help researchers deal with ethical and methodological dilemmas in their research. Ethical review is necessary to ensure researchers and participants are protected, yet the requirement to ‘pass’ numerous committees may be challenging particularly for health researchers who work with vulnerable groups and sensitive topics. The inclusion of these groups/topics is crucial if health researchers are to understand health disparities and implement appropriate interventions with health benefits for vulnerable populations. It is proposed that to overcome ethical and methodological challenges and pitfalls, researchers must implement strategies that advocate for, and increase the participation of, vulnerable populations in health research. A ‘children’s rights based approach’ using participatory methodology will be described that draws on the jurisprudence of international law, (United Nations Convention on the Rights of the Child, 1989) and provides a framework that may empower ethics committees to carry out their function confidently. The role of the researcher, framed within the context of doctoral level study, will be reviewed in terms of the investment required and benefits of utilising this approach. It will be argued that adopting this approach with vulnerable groups, not only guarantees their meaningful participation in the research process and permits their voices to be heard, but also offers ethics committees an internationally agreed upon legal framework, ratified by their governing States, from which to fulfil their obligations and resolve their ethical dilemmas. Increasing the representation and participation of vulnerable groups in health research can inform the development of health policy and practice based on ‘insider knowledge’ that better engages with and more adequately reflects their specific needs. This is likely to yield numerous health, social and economic benefits for all of society through the delivery of more equitable, effective and sustainable services.

Research Ethics in Divided and Violent Societies: Seizing the Ethical Opportunity

This chapter explores how to conduct social research in divided and violent societies by developing the concept of the ‘ethical opportunity’. The ‘ethical opportunity’ is situated in a brief discussion of ‘action’ and feminist approaches to research. It argues that seizing the ethical opportunity requires researchers to: plan for their personal safety, plan for participants’ personal safety and plan how they will communicate and disseminate their results. It draws on the author’s personal experience researching in South Africa, Zimbabwe and Northern Ireland, concluding that it is in the communication and dissemination phase that researchers’ hopes for ‘making a difference’ may be realised or dashed. It cautions would-be researchers to manage their own – and research participants’ – expectations about what social research can achieve. Its effects may not often be as transforming and liberating as idealistic researchers hope for, but that should not dissuade them from striving towards those ends.

The ethics of ethical debates in peace and conflict research: Notes towards the development of a research covenant

This article outlines the case for peace and conflict researchers to formulate a research covenant to better shape their ethical obligations and responsibilities. This is an urgent necessity given that ethical debates have in some proponents become emotive and are not conducted in an ethical manner. In coming to this assessment, the article reviews trends in the research ethics literature and draws out some of the generic issues addressed in a review of the personal reflexivity that an assortment of individual peace and conflict researchers have engaged in when recounting their fieldwork experiences. These generic issues are reformulated in an attempt to codify appropriate ethical practice in peace and conflict research, and they go towards determining the contents of the research covenant. It is suggested that the research covenant is a more ethical way to debate the ethics of peace and conflict research.

Retrospective research: What are the ethical and legal requirements?

Retrospective research is conducted on already available data and/or biologic material. Whether such research requires that patients specifically consent to the use of "their" data continues to stir controversy. From a legal and ethical point of view, it depends on several factors. The main criteria to be considered are whether the data or the sample is anonymous, whether the researcher is the one who collected it and whether the patient was told of the possible research use. In Switzerland, several laws delineate the procedure to be followed. The definition of "anonymous" is open to some interpretation. In addition, it is debatable whether consent waivers that are legally admissible for data extend to research involving human biological samples. In a few years, a new Swiss federal law on human research could clarify the regulatory landscape. Meanwhile, hospital-internal guidelines may impose stricter conditions than required by federal or cantonal law. Conversely, Swiss and European ethical texts may suggest greater flexibility and call for a looser interpretation of existing laws. The present article provides an overview of the issues for physicians, scientists, ethics committee members and policy makers involved in retrospective research in Switzerland. It aims at provoking more open discussions of the regulatory problems and possible future legal and ethical solutions.

Inclusion and exclusion in nutrigenetics clinical research: ethical & scientific challenges

Background/Aims: There are compelling reasons to ensure participation of ethnic minorities and populations of all ages worldwide in nutrigenetics clinical research. If findings in such research are valid for some individuals, groups, or communities, and not for others, then ethical questions of justice – and not only issues of methodology and external validity – arise. This paper aims to examine inclusion in nutrigenetics clinical research and its scientific and ethical challenges. Methods: 173 publications were identified through a systematic review of clinical studies in nutrigenetics published between 1998 and 2007 inclusively. Data such as participants' demographics as well as eligibility criteria were extracted. Results: There is no consistency in the way participants’ origins (ancestry, ethnicity or race) and ages are described in publications. A vast majority of the studies identified was conducted in North America and Europe and focused on “white” participants. Our results show that pregnant women (and fetuses), minors and the elderly (≥75 years old) remain underrepresented. Conclusion: Representativeness in nutrigenetics research is a challenging ethical and scientific issue. Yet, if nutrigenetics is to benefit whole populations and be used in public and global health agendas, fair representation, as well as clear descriptions of participants in publications are crucial.

Ethical Considerations of Dissemination and Restitution of Findings in Global Health Research

Étude de cas / Case study

Engaging Ethical Issues Associated with Research and Public Health Interventions During Humanitarian Crises: Review of a Dialogic Workshop

Compte-rendu / Review

Embryonic stem cell research: the principal ethical issue-when does life begin?

Embryonic stem cell research is perhaps the most controversial ethical issue of the new century. This is not surprising. It promises unprecedented potential benefits to human health but arguably comes at the expense of violating the most fundamental moral virtue - the right to life. The debate has become increasingly emotive. The Catholic Church has labelled stem cell research as cannibalism.1 This has led perhaps the world's most famous moral philosopher, Peter Singer, to label the Church, which has over a billion followers, as irrelevant.2 The principal purpose of this paper is not to  discuss all of the relevant moral issues in the embryonic stem cell debate. Considerations of space do not permit this and in any event there are  numerous reports which catalogue the relevant issues.3 Rather we attempt  to identify the crux of the issues in the debate. In our view, the main issue is the point at which life commences. We offer some preliminary observations on this matter. This discussion appears in section four. In the next section, we provide a brief  overview of nature and potential benefits of stem cell  research. This is followed by a discussion of the current legal position. In the final section, we offer some concluding remarks including some  suggestions for law reform.

Social work research : ethical and political contexts

Written in an engaging and accessible style, this book bridges the gap between theory and reality by discussing a range of research paradigms and placing them in the context of professional social work. It also discusses the political and ethical contexts that are intrinsic to social work practice.