The responses of research participants and their next of kin to receiving feedback of genetic test results following participation in the Australian Ovarian Cancer Study

Nina Hallowell*, Kathryn Alsop, Margaret Gleeson, Ashley Crook, Loren Plunkett, David Bowtell, Gillian Mitchell, Australian Ovarian Cancer Study Group, Mary-Anne Young

*Corresponding author for this work

Research output: Contribution to journalArticle

14 Citations (Scopus)

Abstract

Purpose: The generation of clinically significant genetic data during research studies raises a number of ethical issues about the feedback of this information to research participants. Little is known about research participants' experiences of this practice. Methods:This qualitative interview study investigated research participants' (n = 10) or their nominated next of kin's (relatives) (n = 15) experiences of receiving BRCA1 and BRCA2 genetic test information following participation in the Australian Ovarian Cancer Study. Results:Interviewees had mixed responses to receiving feedback. The participants of the Australian Ovarian Cancer Study were more positive about receiving feedback, acknowledging that the genetic information may be useful for their kin. Relatives frequently described themselves as initially distressed at receiving feedback, particularly those who were unaware of the participation of their mothers in the Australian Ovarian Cancer Study. The participants of the Australian Ovarian Cancer Study and their relatives expressed an intention to disseminate the information to relatives following confirmation of the result. Conclusion:We suggest that research participants be encouraged to discuss their participation with family members from the outset. We also outline a number of different strategies for providing feedback to research participants and their next of kin that may lessen the immediate negative impact of receiving feedback of research results.

Original languageEnglish
Pages (from-to)458-465
Number of pages8
JournalGenetics in Medicine
Volume15
Issue number6
DOIs
Publication statusPublished - 1 Jun 2013
Externally publishedYes

Keywords

  • consent
  • familial disclosure
  • feedback
  • genetics
  • qualitative interviews
  • research results

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