Research Participants' Preferences for Hypothetical Secondary Results from Genomic Research

J Genet Couns. 2017 Aug;26(4):841-851. doi: 10.1007/s10897-016-0059-2. Epub 2016 Dec 29.

Abstract

Secondary or incidental results can be identified in genomic research that increasingly uses whole exome/genome sequencing. Understanding research participants' preferences for secondary results and what influences these decisions is important for patient education, counseling, and consent, and for the development of policies regarding return of secondary results. Two hundred nineteen research participants enrolled in genomic studies were surveyed regarding hypothetical preferences for specific types of secondary results, and these preferences were correlated with demographic information and psychosocial data. The majority of research participants (73%) indicated a preference to learn about all results offered, with no clear pattern regarding which results were not desired by the remaining participants. Participants who reported greater interest in genetic privacy were less likely to indicate a preference to learn all results, as were individuals who self-identified as Jewish. Although most research participants preferred to receive all secondary results offered, a significant subset preferred to exclude some results, suggesting that an all-or-none policy would not be ideal for all participants. The correlations between preferences to receive secondary results, religious identification, and privacy concerns demonstrate the need for culturally sensitive counseling and educational materials accessible to all education levels to allow participants to make the best choices for themselves.

Keywords: Genomics; Incidental findings; Incidental results; Return of results; Secondary findings; Secondary results; Whole exome sequencing.

MeSH terms

  • Adult
  • Aged
  • Aged, 80 and over
  • Biomedical Research*
  • Choice Behavior*
  • Female
  • Genetic Privacy / psychology*
  • Genetic Testing*
  • Genomics*
  • Humans
  • Incidental Findings*
  • Male
  • Middle Aged
  • Research Subjects / psychology*
  • Whole Exome Sequencing*
  • Young Adult