Acceptance of genetic testing for hereditary breast ovarian cancer among study enrollees from an African American kindred

Anita Yeomans Kinney, Sara Ellis Simonsen, Bonnie Jeanne Baty, Diptasri Mandal, Susan L. Neuhausen, Kate Seggar, Rich Holubkov, Ken Smith

Research output: Contribution to journalArticlepeer-review

27 Scopus citations

Abstract

Clinical availability of genetic testing for cancer predisposition genes is generating a major challenge for U.S. health care systems to provide relevant genetic services to underserved populations. Here we present rates of study enrollment and utilization of genetic testing in a research study on BRCA1 testing acceptance in one large kindred. We also present data on baseline access to genetic information as well as enabling and obstructing factors to study enrollment. The study population included female and male members of an African American kindred based in the rural southern United States with an identified BRCA1 mutation. A combination of quantitative and qualitative data were collected and analyzed. Of the 161 living, eligible, and locatable kindred members. 105 (65%) enrolled in the study. Family, personal, and educational motivations were the most commonly endorsed reasons for study participation. The most commonly cited reasons for refusal to participate in the study were: lack or interest, time constraints, and negative experiences with prior participation in genetic research. Eighty three percent of the participants underwent BRCA1 testing. In multiple logistic regression analysis, age 40-49 (odds ratio (OR) = 6.9; 95% confidence interval (CI) = 1.2-39.5), increased perceived risk of being a BRCA1 mutation carrier (OR = 4.1; 95% CI = 1.1-14.6), and high cancer genetics knowledge levels (OR = 1.5; 95% CI = 1.1-2.3) were associated with BRCA1 testing acceptance. The results of this study indicate that cognitive and demographic factors may influence genetic research participation and genetic testing decisions among African Americans who are at increased risk of carrying a deleterious BRCA1 mutation.

Original languageEnglish (US)
Pages (from-to)813-826
Number of pages14
JournalAmerican Journal of Medical Genetics
Volume140 A
Issue number8
DOIs
StatePublished - Apr 15 2006
Externally publishedYes

All Science Journal Classification (ASJC) codes

  • Genetics
  • Genetics(clinical)

Keywords

  • African American
  • BRCA1 gene mutation
  • Blacks
  • Cultural sensitivity
  • Genetic testing
  • Research enrollment

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