Disclosure of incidental findings in cancer genomic research: investigators' perceptions on obligations and barriers

Clin Genet. 2015 Oct;88(4):320-6. doi: 10.1111/cge.12540. Epub 2014 Dec 9.


Although there has been significant research surrounding incidental findings (IFs), the guidelines and information provided to investigators remain unspecific, unclear, and often generalize the course of action to everyone in the field. We explored the perceptions and experiences of investigators regarding the return of IFs in genetic research. Researchers and clinician-researchers were invited to participate in semi-structured telephone interviews in Quebec and Ontario. Twenty professionals participated, and thematic analysis was used to analyze the transcriptions. Four contextual elements emerged: (i) degree of significance of results, (ii) respect for persons, (iii) infrastructure implications, and (iv) professional responsibilities. Our findings demonstrate that all investigators raised similar contextual elements surrounding the return of IFs. However, some nuances in participants' experiences of the understanding of professional responsibilities also emerged. Because of the existing nuances, a one-size-fits-all approach is inappropriate, suggesting that context ought to be considered in decisions about IFs.

Keywords: bioethics; cancer research; genetics; genomics; incidental findings; investigator duties; research ethics; return of results.

Publication types

  • Research Support, Non-U.S. Gov't

MeSH terms

  • Communication Barriers
  • Disclosure*
  • Incidental Findings*
  • Moral Obligations*
  • Neoplasms / genetics*
  • Research Personnel / psychology*