'Relief of oppression': An organizing principle for researchers' obligations to participants in observational studies in the developing world

<p>Abstract</p> <p>Background</p> <p>A central question in the debate about exploitation in international research is whether investigators and sponsors from high-income countries (HIC) have obligations to address background conditions of injustice in the communities in which they conduct their research, beyond the healthcare and other research-related needs of participants, to aspects of their basic life circumstances.</p> <p>Discussion</p> <p>In this paper, we describe <b>t</b>he Majengo sexually transmitted disease (STD) Cohort study, a long-term prospective, observational cohort of sex workers in Nairobi, Kenya. Despite important scientific contributions and a wide range of benefits to the women of the cohort, most of the women have remained in the sex trade during their long-standing participation in the cohort, prompting allegations of exploitation. The Majengo STD cohort case extends the debate about justice in international research ethics beyond clinical trials into long-term observational research. We sketch the basic features of a new approach to understanding and operationalizing obligations of observational researchers, which we call 'relief of oppression'. 'Relief of oppression' is an organizing principle, analogous to the principle of harm reduction that is now widely applied in public health practice. Relief of oppression aims to help observational researchers working in conditions of injustice and deprivation to clarify their ethical obligations to participants. It aims to bridge the gap between a narrow, transaction-oriented account of avoiding exploitation and a broad account emphasizing obligations of reparation for historic injustices. We propose that relief of oppression might focus researchers' consideration of benefits on those that have some relevance to background conditions of injustice, and so elevate the priority of these benefits, in relation to others that might be considered and negotiated with participants, according to the degree to which the participating communities are constrained in their realization of fundamental freedoms.</p> <p>Summary</p> <p>The over-arching aim of relief of oppression is that, within the range of benefits negotiated over time with the local communities and organizations, an increasing proportion reflects a shared interest in improving participants' fundamental freedoms. We describe how harm reduction serves as a useful analogy for how we envision relief of oppression functioning in international research.</p

The authority of next-of-kin in explicit and presumed consent systems for deceased organ donation: an analysis of 54 nations

Background. The degree of involvement by the next-of-kin in deceased organ procurement worldwide is unclear. We investigated the next-of-kin’s authority in the procure-ment process in nations with either explicit or presumed consent. Methods. We collected data from 54 nations, 25 with presumed consent and 29 with explicit consent. We char-acterized the authority of the next-of-kin in the decision to donate deceased organs. Specifically, we examined whether the next-of-kin’s consent to procure organs was always required and whether the next-of-kin were able to veto procurement when the deceased had expressed a wish to donate. Results. The next-of-kin are involved in the organ procure-ment process in most nations regardless of the consent principle and whether the wishes of the deceased to be a donor were expressed or unknown. Nineteen of the 25 nations with presumed consent provide a method for individuals to express a wish to be a donor. However, health professionals in only four of these nations responded that they do not override a deceased’s expressed wish because of a family’s objection. Similarly, health profes-sionals in only four of the 29 nations with explicit consent proceed with a deceased’s pre-existing wish to be a donor and do not require next-of-kin’s consent, but caveats still remain for when this is done. Conclusions. The next-of-kin have a considerable influ-ence on the organ procurement process in both presumed and explicit consent nations

Attitudes towards comparison of male and female genital cutting in a Swedish Somali population

Introduction In Sweden, the law treats female genital cutting (FGC) differently from male genital cutting (MGC). However, the comparability of the medical, ethical, and legal aspects of genital cutting of girls and boys are increasingly discussed by scholars, although little is known about how practicing communities view these aspects. This study aimed to explore attitudes towards comparison of genital cutting of girls and boys among Swedish Somalis, and to investigate factors associated with considering the two practices to be comparable. Material and methods In a cross-sectional questionnaire with 648 Swedish Somali men and women from four Swedish cities, descriptive statistics and logistic regression were used for the analysis. Results Among the Swedish Somalis, 10% considered FGC and MGC to be comparable practices. A majority (98%) of the participants thought FGC could cause long-term health complications, but only 1% considered the physical health disadvantage of MGC would outweigh the physical health benefits. FGC was perceived to be a violation of children's rights by 60%, whereas this proportion for MGC was 3%. Individuals who had a dominant bridging social capital and those who expressed that performing FGC follows religion were more likely to think that FGC and MGC were comparable practices. Conclusions The increased global attention and emphasis on the comparability of genital cutting of boys and girls was not reflected in this study among Swedish Somalis. Rather, attitudes reflected the common description of the two practices in global public health campaigns, portraying FGC as a harmful practice violating children's rights, while describing MGC as a public health measure. Social interactions and separation of FGC from religion could explain why FGC and MGC were not considered comparable