In the 30 years since its inception under the auspices of the National Human Genome Research Institute (NHGRI), the field devoted to examining the ethical, legal and social implications (ELSI) of g...

Effectively addressing ethical issues in precision medicine research in Africa requires a holistic social contract that integrates biomedical knowledge with local cultural values and Indigenous knowledge systems. Drawing on African epistemologies such as ubuntu and ujamaa and on our collective experiences in genomics and big data research for sickle cell disease, hearing impairment, and fragile X syndrome and the project Public Understanding of Big Data in Genomics Medicine in Africa, we envision a transformative shift in health research data governance in (...) Africa that could help create a sense of shared responsibility between all stakeholders in genomics and data‐driven health research in Africa. This shift includes proposing a social contract for genomics and data science in health research that is grounded in African communitarianism such as solidarity, shared decision‐making, and reciprocity. We make several recommendations for a social contract for genomics and data science in health, including the coproduction of genomics knowledge with study communities, power sharing between stakeholders, public education on the ethical and social implications of genetics and data science, benefit sharing, giving voice to data subjects through dynamic consent, and democratizing data access to allow wide access by all research stakeholders. Achieving this would require adopting participatory approaches to genomics and data governance. (shrink)

The integration of genomics into public health and medicine is happening at a faster rate than the accrual of the capabilities necessary to ensure the equitable, global distribution of its clinical benefits. Uneven access to genetic testing and follow‐up care, unequal distribution of the resources required to access and participate in research, and underrepresentation of some descent groups in genetic and clinical datasets (and thus uncertain genetic results for some patients) are just some of the reasons to center justice in (...) genomics. A more just genomics is an imperative rooted in the ethical obligations incurred by a publicly funded science that is reliant on human data. These features of genomics indebt the genomics enterprise and compel the expanded scope of responsibility proposed by the authors of this special report. The report begins to define justice in genomics for different stakeholder groups and proposes substantial shifts in power, resource distribution, scientific practice, and governance that could enable genomics to meet its obligations to humanity. (shrink)

This article draws on key normative principles grounded in important values – solidarity, partiality and friendliness – in African philosophy to think critically and deeply about the ethical challenges around returning individual genetic research findings in African genomics research. Precisely, we propose that the normative implication of solidarity, partiality and friendliness is that returning findings should be considered as a gesture of goodwill to participants to the extent that it constitutes acting for their well-being. Concretely, the value of friendliness may (...) imply that one ought to return actionable results to participants even when their preferences regarding feedback are unknown. Notwithstanding, returning individual genetic results will have a cost implication. The cost of feeding back is relevant in the context of African genomics research projects, which are often funded by international sponsors and should be researched further. (shrink)