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  • 23 - Changing Identities in Disclosure of Research Findings

  • from Section IIA - Private and Public Dimensions of Health Research Regulation
  • Edited by Graeme Laurie, University of Edinburgh, Edward Dove, University of Edinburgh, Agomoni Ganguli-Mitra, University of Edinburgh, Catriona McMillan, University of Edinburgh, Emily Postan, University of Edinburgh, Nayha Sethi, University of Edinburgh, Annie Sorbie, University of Edinburgh
  • Book:
    The Cambridge Handbook of Health Research Regulation
    Published online:
    09 June 2021
    Print publication:
    24 June 2021, pp 229-238
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  • Summary

    This chapter offers a perspective on the long-running ethical debate about the nature and extent of responsibilities to return individually relevant research findings from health research to participants. It highlights the ways in which shifts in the research landscape are changing the roles of researchers and participants, the relationships between them, and what this might entail for the responsibilities owed towards those who contribute to research by taking part in it. It argues that a greater focus on the informational interests of participants is warranted and that, corollary to this, the potential value of findings beyond their clinical utility deserves greater attention. It proposes participants’ interests in using research findings in developing their own identities as a central example of this wider value and argues that these could provide grounds for disclosure.