Disparities in genetic services utilization in a random sample of young breast cancer survivors

Christos Nikolaidis, Debra Duquette, Kari E. Mendelsohn-Victor, Beth Anderson, Glenn Copeland, Kara J. Milliron, Sofia D. Merajver, Nancy K. Janz, Laurel L. Northouse, Sonia A. Duffy, Maria C. Katapodi*

*Corresponding author for this work

Research output: Contribution to journalArticlepeer-review

11 Scopus citations


Purpose: Increasing use of genetic services (counseling/testing) among young breast cancer survivors (YBCS) can help decrease breast cancer incidence and mortality. The study examined use of genetic services between Black and White/Other YBCS, attitudes and knowledge of breast cancer risk factors, and reasons for disparities in using genetic services. Methods: We used baseline data from a randomized control trial including a population-based, stratified random sample of 3000 potentially eligible YBCS, with oversampling of Black YBCS. Results: Among 883 YBCS (353 Black, 530 White/Other) were significant disparities between the two racial groups. More White/Other YBCS had received genetic counseling and had genetic testing than Blacks. Although White/Other YBCS resided farther away from board-certified genetic counseling centers, they had fewer barriers to access these services. Black race, high out-of-pocket costs, older age, and more years since diagnosis were negatively associated with use of genetic services. Black YBCS had lower knowledge of breast cancer risk factors. Higher education and genetic counseling were associated with higher genetic knowledge. Conclusion: Racial inequalities of cost-related access to care and education create disparities in genetic services utilization. System-based interventions that reduce socioeconomic disparities and empower YBCS with genetic knowledge, as well as physician referrals, can increase access to genetic services.

Original languageEnglish (US)
Pages (from-to)1363-1370
Number of pages8
JournalGenetics in Medicine
Issue number6
StatePublished - Jun 1 2019


  • cancer registry
  • distance as a barrier to access genetic services
  • equity in using cancer genetic services
  • geocoding
  • young breast cancer survivors

ASJC Scopus subject areas

  • Genetics(clinical)


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