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Duty to disclose what? Querying the putative obligation to return research results to participants
  1. F A Miller1,
  2. R Christensen1,
  3. M Giacomini2,3,
  4. J S Robert4,5
  1. 1
    Department of Health, Policy, Management & Evaluation, University of Toronto, Canada
  2. 2
    Centre for Health Economics and Policy Analysis, McMaster University, Hamilton, Ontario, Canada
  3. 3
    Department of Clinical Epidemiology & Biostatistics, McMaster University, Hamilton, Ontario, Canada
  4. 4
    School of Life Sciences, Arizona State University, Tempe, Arizona, USA
  5. 5
    Department of Basic Medical Sciences, University of Arizona College of Medicine – Phoenix, Arizona, USA
  1. F A Miller, University of Toronto, 155 College St, 4th Floor, Toronto, Ontario MST 3M6, Canada; fiona.miller{at}utoronto.ca

Abstract

Many research ethics guidelines now oblige researchers to offer research participants the results of research in which they participated. This practice is intended to uphold respect for persons and ensure that participants are not treated as mere means to an end. Yet some scholars have begun to question a generalised duty to disclose research results, highlighting the potential harms arising from disclosure and questioning the ethical justification for a duty to disclose, especially with respect to individual results. In support of this view, we argue that current rationales for a duty of disclosure do not form an adequate basis for an ethical imperative. We review policy guidance and scholarly commentary regarding the duty to communicate the results of biomedical, epidemiological and genetic research to research participants and show that there is wide variation in opinion regarding what should be disclosed and under what circumstance. Moreover, we argue that there is fundamental confusion about the notion of “research results,” specifically regarding three core concepts: the distinction between aggregate and individual results, amongst different types of research, and across different degrees of result veracity. Even where policy guidance and scholarly commentary have been most forceful in support of an ethical imperative to disclose research results, ambiguity regarding what is to be disclosed confounds ethical action.

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Footnotes

  • Competing interests: None.

  • i Parker11 suggests that the duty to warn serves as the one clear and exceptional instance in which research results should be returned. The commentators discussed here also interpret disclosure as exceptional, but justify the return of results as a duty to disclose rather than a duty to warn, and use broader criteria than are typically relied upon for a duty to warn (ie, averting immediate and life- or severe-health- threatening harm).

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