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Should institutions fund the feedback of individual findings in genomic research?
  1. Cornelius Ewuoso1,
  2. Benjamin Berkman2,
  3. Ambroise Wonkam3,4,
  4. Jantina de Vries5,6
  1. 1 Steve Biko Centre for Bioethics, University of the Witwatersrand Faculty of Health Sciences, Johannesburg, Gauteng, South Africa
  2. 2 Department of Bioethics, National Institutes of Health, Bethesda, Maryland, USA
  3. 3 Division of Human Genetics, University of Cape Town, Cape Town, South Africa
  4. 4 McKusick-Nathans Institute and Department of Genetic Medicine, Johns Hopkins University School of Medicine, Baltimore, Maryland, USA
  5. 5 Department of Medicine, Faculty of Health Sciences, University of Cape Town, Cape Town, South Africa
  6. 6 Neuroscience Institute, University of Cape Town, Cape Town, South Africa
  1. Correspondence to Dr Cornelius Ewuoso, Steve Biko Centre for Bioethics, University of Johannesburg, 29 Carse O'Gowrie Rd, Parktown, Johannesburg 2193, Gauteng, South Africa; cornelius.ewuoso{at}uct.ac.za

Abstract

The article argues the thesis that institutions have a prima facie obligation to fund the feedback of individual findings in genomic research conducted on the African continent by drawing arguments from an underexplored Afro-communitarian view of distributive justice and rights of researchers to be aided. Whilst some studies have explored how institutions have a duty to support return as a form of ancillary care or additional foreseeable service in research by mostly appealing to dominant principles and theories in the Global North, this mostly normative study explores this question by appealing to underexplored African philosophy. This is a new way of thinking about institutional responsibility to fund feedback and responds to the call to decolonise health research in Africa. Further studies are required to study how this prima facie obligation will interact with social contexts and an institution’s extant relationships to find an actual duty. The research community should also work out procedures, policies and governance structures to facilitate feedback. In our opinion, though the impacts of feeding back can inform how institutions think about their actual duty, these do not obliterate the binding duty to fund feedback.

  • ethics- research

Data availability statement

Data sharing not applicable as no data sets generated and/or analysed for this study.

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Data availability statement

Data sharing not applicable as no data sets generated and/or analysed for this study.

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Footnotes

  • Contributors JdV conceived the idea and shared it with CE, who in turn shared it with BB and AW. CE wrote the first draft. JdV, BB and AW significantly revised the draft, enhanced it and suggested new references. All authors revised the draft one more time and did not object to its submission. The authors are equally responsible for the content of the manuscript. CE is the guarantor and accepts responsibility for the overall content of the finished work. CE submitted the article.

  • Competing interests None declared.

  • Provenance and peer review Not commissioned; externally peer reviewed.