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Should institutions fund the feedback of individual findings in genomic research?

Cornelius Olukunle EwuosoBenjamin E BerkmanAmbroise WonkamJantina de Vries
Published in: Journal of medical ethics (2022)
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.
Keyphrases
  • healthcare
  • health insurance
  • mental health
  • palliative care
  • public health
  • copy number
  • gene expression
  • high resolution
  • transcription factor
  • pain management
  • binding protein
  • global health