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A genetic researcher's devil's dilemma: Warn relatives about their genetic risk or respect confidentiality agreements with research participants?

Lieke M van den HeuvelEls L M MaeckelbergheM Corrette PloemImke Christiaans
Published in: BMC medical ethics (2021)
We believe that the absolute confidence promised to research participants outweighs the interests of their relatives, even though it can be claimed that relatives at risk of a genetic disease do, in principle, have a right to know information collected about their health. Not respecting confidentiality agreements could cause distrust between researchers and research participants and possibly harm the relationship between probands and relatives. Relatives' health interests can still be taken into account without jeopardizing participant trust, by considering alternative scenarios, including sharing general study findings on the barriers participants experience with their healthcare professionals and by offering participants psychosocial support for family communication.
Keyphrases
  • health information
  • healthcare
  • mental health
  • public health
  • genome wide
  • gene expression