Population-based biobank participants' preferences for receiving genetic test results

J Hum Genet. 2017 Dec;62(12):1037-1048. doi: 10.1038/jhg.2017.81. Epub 2017 Aug 10.

Abstract

There are ongoing debates on issues relating to returning individual research results (IRRs) and incidental findings (IFs) generated by genetic research in population-based biobanks. To understand how to appropriately return genetic results from biobank studies, we surveyed preferences for returning IRRs and IFs among participants of the Tohoku Medical Megabank Project (TMM). We mailed a questionnaire to individuals enrolled in the TMM cohort study (Group 1; n=1031) and a group of Tohoku region residents (Group 2; n=2314). The respondents were required to be over 20 years of age. Nearly 90% of Group 1 participants and over 80% of Group 2 participants expressed a preference for receiving their genetic test results. Furthermore, over 60% of both groups preferred to receive their genetic results 'from a genetic specialist.' A logistic regression analysis revealed that engaging in 'health-conscious behaviors' (such as regular physical activity, having a healthy diet, intentionally reducing alcohol intake and/or smoking and so on) was significant, positively associated with preferring to receive their genetic test results (odds ratio=2.397 (Group 1) and 1.897 (Group 2)). Our findings provided useful information and predictors regarding the return of IRRs and IFs in a population-based biobank.

MeSH terms

  • Adult
  • Aged
  • Aged, 80 and over
  • Biological Specimen Banks*
  • Cohort Studies
  • Communication
  • Cross-Sectional Studies
  • Disclosure*
  • Female
  • Genetic Testing
  • Humans
  • Incidental Findings*
  • Japan
  • Male
  • Middle Aged
  • Patient Preference*
  • Surveys and Questionnaires
  • Young Adult