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Abstract: This paper concentrates on controversies about children''s consent, and reviews how children''s changing status as competent decision makers about healthcare and research has gradually gained greater respect. Criteria for competence have moved from age towards individual children''s experience and understanding. Uncertain and shifting concepts of competence and its identification with adulthood and childhood are examined, together with levels of decision-making and models for assessing children''s competence. Risks and uncertainties, methods of calculating the frequency and severity of risks, the concept of ‘therapeutic research’ and problems of expanding consent beyond its remit are considered. The paper ends by considering how strengths and limitations in children''s status and capacities to consent can be mirrored in researchers’ and practitioners’ own status and capacities. Examples are drawn from empirical research studies about decision-making in healthcare and research involving children in the UK. [Copyright &y& Elsevier]

Abstract: This paper situates discussion of the ethics of ethnographic research against the background of a theoretical and methodological debate about the relationship between ethics and method, and about the relationships between research methods and their objects. In particular, the paper investigates the implications of folding together the ethical and the empirical in research and argues that this requires the development of new ethico-ethnographic methods for the investigation of ethico-moral objects. The paper falls into three main parts. The first considers calls for what has come to be known as empirical ethics, that is, for a more empirically informed bioethics, by way of an exploration of the integration of ethnographic methods in bioethics, and concludes that approaches which see the ethical and the empirical as ‘complementary’ do not do justice to the methodological implications of enfolding the ethical and the ethnographic. The second part juxtaposes this with calls for the integration of ethics in ethnography and, similarly, argues that the enfolding of the ethical and the empirical in ethnography calls for the development of new methods. The paper goes on to problematise the ‘negotiational’ approaches to informed consent preferred by many ethnographers, arguing that the concept of negotiation, rather than offering a solution to the problem of consent, is itself ethically complex and in need of analysis. The paper argues that, in the context of ethnographic research, the possibility of negotiational forms of consent depends upon engagement between researchers and researched, with unavoidably ‘ethical’ concepts such as ‘respect’, ‘recognition’, ‘dignity’, ‘justice’ and so on, and that this poses methodological challenges to ethnography. The paper''s third section explores the implications of these arguments for research practice, using The Genethics Club as an example. [Copyright &y& Elsevier]

Abstract: In this paper we examine the application of informed consent to ethnographic research in health care settings. We do not quarrel with either the principle of informed consent or its translation into the requirement that research should only be carried out with consenting participants. However, we do challenge the identification of informed consent with the particular set of bureaucratic practices of ethical review which currently operate in Canada, the US and elsewhere. We argue that these anticipatory regulatory regimes threaten the significant contribution of ethnographic research to the creation of more efficient, more effective, more equitable and more humane health care systems. Informed consent in ethnographic research is neither achievable nor demonstrable in the terms set by anticipatory regulatory regimes that take clinical research or biomedical experimentation as their paradigm cases. This is because of differences in the practices of ethnographic and biomedical research which we discuss. These include the extended periods of time ethnographers spend in the research setting, the emergent nature of ethnographic research focus and design, the nature and positioning of risk in ethnographic research, the power relationships between researchers and participants, and the public and semi-public nature of the settings normally studied. Anticipatory regulatory regimes are inimical to ethnographic research and risk undermining the contribution of systematic inquiry to understanding whether institutions do what they claim to do, fairly and civilly and with an appropriate mobilisation of resources. We do not suggest that we should simply ignore ethics or leave matters to the individual consciences of researchers. Rather, we need to develop and strengthen professional models of regulation which emphasise education, training and mutual accountability. We conclude the paper with a number of suggestions about how such professional models might be implemented. [Copyright &y& Elsevier]

Abstract: Informed consent is a concept which attempts to capture and convey what is regarded as the appropriate relationship between researcher and research participant. Definitions have traditionally emphasised respect for autonomy and the right to self-determination of the individual. However, the meaning of informed consent and the values on which it is based are grounded in society and the practicalities of social relationships. As society changes, so too do the meaning and practice of informed consent. In this paper, we trace the ways in which the meaning and practice of informed consent has changed over the last 35 years with reference to four qualitative studies of parenting and children in the UK which we have undertaken at different points in our research careers. We focus in particular on the shifting boundaries between the professional and personal, and changing expressions of agency and power in a context of heightened perceptions of risk in everyday life. We also discuss developments in information and communication technologies as a factor in changing both the formal requirements for and the situated practicalities of obtaining informed consent. We conclude by considering the implications for informed consent of both increasing bureaucratic regulation and increasingly sophisticated information and communication technologies and suggest strategies for rethinking and managing ‘consent’ in qualitative research practice. [Copyright &y& Elsevier]

Abstract: Conducting anthropological research into situations where public health interventions are ongoing raises a number of complex ethical issues. This paper addresses this by focusing on recent debate around questions of informed consent in research situations into health care in the ‘developing’ world. Two issues are developed: firstly, that of anthropological engagement with medical research trials; and secondly, how medical ethics debates have impinged upon and influenced anthropological ideas of ethics. Drawing on personal anthropological research into the implementation of the WHO prescribed tuberculosis control programme (DOTS) in the context of Nepal, I outline a number of ethical dilemmas and issues that arose. This research context included other ongoing research into DOTS implementation, as well as the local culture of health care provision. It involved moving between a number of sites and subject positions while interacting with heath professionals and patients. In conclusion, rather than prescribing ethical norms for researchers in such situations, I argue that we need more ethnographic examples and case studies as a means of thinking through the issues. I suggest that we need to reflect on both the ethical issues that arise when undertaking research into multifaceted public health interventions and into the situations where ethical guidelines and stipulations are formulated. The best place for this may be the Internet, where we increasingly see the conditions emerging for open dialogue. [Copyright &y& Elsevier]

Abstract: Trust is an important theme running through the literature on the ethics of biomedical research, but it is rarely given centre stage. In this paper, we present data gathered from a study aimed at exploring community views regarding the informed consent processes carried out by a large research centre on the Kenyan Coast. The findings point to the centrality of trust and elements of mistrust in general community views, in parents’ (mis)understanding of studies they consent their children to be involved in, in refusals and concerns, and in community members’ views about whether informed consent is a relevant and practical model to follow. Tentative ideas on how trust and a healthy mistrust might be balanced highlight the importance of strengthening communication surrounding basic health care as well as research, and of fostering ‘an inner generated ethic of service’. The latter is particularly fundamental, but cannot be built and regulated through the laws, policies and guidelines that currently govern biomedical research practice. [Copyright &y& Elsevier]