Informed consent in research

The relationship between physician and patient, as generally delineated by the Hippocratic Oath and the American Medical Association's 1994 Principles of Medical Ethics, is one between a fiduciary and a principal. In such a relationship, the duties of loyalty and trust run from the fiduciary to the principal. The fiduciary (physician) is the person to whom the relevant interests of the principal (patient) are entrusted. It is the medical best interests of the patient, not the physician, that are in trust. The relationship, while usually gratifying and financially rewarding, is essentially one of professional altruism. Nevertheless, the satisfaction of this fiduciary obligation requires the performance of general duties at levels dictated by the nature and scope of medical intervention.     

Informed consent,gatekeepers and go‐betweens: negotiating consent in child and youth‐orientated institutions

Gaining informed consent from research participants is widely regarded as central to ethical research practice. This article reports on research which sought to identify contemporary practice in this area amongst researchers working in fields where research participants are often constructed as vulnerable within the research process, and where their potential involvement tends to be mediated by institutional gatekeepers. Drawing on telephone interview and focus group data, the article focuses specifically on the experiences of researchers working with children and young people. It highlights the tensions experienced by many researchers between a personal commitment to an ethical framework which seeks to prioritise the agency and competency of children and young people, and the conditions imposed upon them by working within institutional settings where these principles may be undermined. This research suggests that the consent practices of child‐ and youth‐orientated institutions, however much frowned upon, tend to go largely unchallenged by researchers, to the detriment of the rights of children and young people to opt in and out of research on their own behalf.     

Guardian consent for children's participation in sociometric research

Sociometric research has been plagued by low consent rates that potentially decrease the validity of assessment results. This study focused on ways to increase consent rates and documentation of guardians' reasons for nonconsent. A planned sequence of increasingly more personalized communication steps with parents yielded a 92% consent rate. Reasons for nonconsent ranged from children telling their parents that they did not want to participate to not having enough information about the research to make an informed decision. Discussion focuses on strategies that may increase guardian support for children's involvement in educational research.     

Sex education,state policy and the principle of mutual consent

Constitutive of the prevalent sexual morality in most Western European countries is the liberal principle of mutual consent (PMC). This sociological fact may give rise to the ethical question as to whether or not the state has the right to make sure that its citizens will observe PMC, among other ways by prescribing some form of sex education which has PMC as its moral content. With reference to the ambiguity of the term ‘morally permissible’, it is argued that PMC can be interpreted in two fundamentally different ways, namely, as the freedom to arrange one's sexual life according to one's own values and preferences (PMC(a)) or as the view that consensual sex is morally all right or morally unobjectionable (PMC(b)). The claim is defended that PMC(a) should be taken as part of the public morality, whereas PMC(b) should be seen as a private morality. Accordingly, the state has the right to take PMC(a) as a basis for its educational policy, but the state is not allowed to prescribe any form of sex education that has PMC(b) as its moral content. The importance of the distinction between PMC(a) and PMC(b) is shown by giving an evaluation of the Dutch state's responses to recent public statements of orthodox religious leaders about the moral status of homosexuality. Also on the basis of this distinction, the central differences between liberal orthodox and fundamentalist orthodox religious views on sexuality and the role of the state are pointed out. In this connection, it is argued that any view which takes PMC(b) as part of the public morality should be disavowed as a kind of ‘liberal funda‐ mentalism’.     

Ethics at home: informed consent in your own backyard

Keying off of a “fully informed consent letter” that consists of the text of her original letter to participants interspersed with insights gained after‐the‐fact, the author explores ethical and institutional power issues that arose as she conducted a qualitative research study in her home institution – her own “backyard” – and offers a critical examination of the concept of “informed consent,” calling for a radical revision of the standard notions of research ethics that blur ethical sensibilities.     

The ages of consent: re-working consensual frameworks in postmodern times

The processes of gaining consent for educational and social research with children and young people have become increasingly complex. A variety of influences contribute to this complexity. In this paper, we use post-structural concepts to focus on the influence of three co-existing and interweaving perspectives: protectionist, participatory and post-structural. Each of these foregrounds different issues in the process of gaining consent for research involving children or young people. We argue for the need to be cognisant of the interplay between the three different perspectives, and what is effected by each. We conclude by proposing a three-overlapping-points-of-entry approach to thinking about research involving children. Our hope is that by sharing the ideas that we have had, we will contribute to those ongoing conversations in which others are trying to re-think consent within the broader framework of why and how do we do research with children and young people.     

Citizenship,beneficence, and informed consent: the ethics of working in mixed-status families

This article draws from a 23-month ethnographic study conducted in mixed-status Mexican homes to detail the particular methodological concerns that arise when conducting research within these legally complex and vulnerable families. Specifically, the analysis illustrates when and why undocumented parents in one focal family asked the ethnographer to consider legally adopting their two young sons in an effort to obtain equal rights for both children and to mitigate the risk of family separation during deportation. The ethical issues of beneficence, informed consent, and reciprocity raised by this particular situation open onto larger methodological and ethical questions relevant to qualitative and ethnographic researchers working within immigrant communities.