Prevalence and correlates of receiving and sharing high-penetrance cancer genetic test results: findings from the Health Information National Trends Survey

Public Health Genomics. 2015;18(2):67-77. doi: 10.1159/000368745.

Abstract

Background/aims: The aim of this study was to explore the prevalence and correlates of receiving and sharing high-penetrance cancer genetic test results.

Methods: Participants completed the population-based, cross-sectional 2013 Health Information National Trends Survey. We examined sociodemographic characteristics of participants reporting having had BRCA1/2 or Lynch syndrome genetic testing, and sociodemographic and psychosocial correlates of sharing test results with health professionals and family members.

Results: Participants who underwent BRCA1/2 or Lynch syndrome genetic testing (n = 77; 2.42% of respondents) were more likely to be female and to have a family or personal history of cancer than those not undergoing testing. Approximately three-quarters of participants shared results with health professionals and three-quarters with their family; only 4% did not share results with anyone. Participants who shared results with health professionals reported greater optimism, self-efficacy for health management, and trust in information from their doctors. Participants who shared results with their family were more likely to be female and to have a personal history of cancer, and had greater self-efficacy for health management, perceived less ambiguity in cancer prevention recommendations, and lower cancer prevention fatalism.

Conclusions: We identified several novel psychosocial correlates of sharing genetic information. Health professionals may use this information to identify patients less likely to share information with at-risk family members.

MeSH terms

  • Adult
  • Aged
  • Colorectal Neoplasms, Hereditary Nonpolyposis* / genetics
  • Colorectal Neoplasms, Hereditary Nonpolyposis* / psychology
  • Cross-Sectional Studies
  • Family / psychology
  • Female
  • Genetic Predisposition to Disease / psychology
  • Genetic Testing / methods*
  • Health Personnel / psychology
  • Hereditary Breast and Ovarian Cancer Syndrome* / genetics
  • Hereditary Breast and Ovarian Cancer Syndrome* / psychology
  • Humans
  • Information Dissemination
  • Male
  • Middle Aged
  • Penetrance
  • Prevalence
  • Professional-Patient Relations*
  • Truth Disclosure