title: Acceptance of genetic testing for hereditary breast ovarian cancer among study enrollees from an African American kindred.
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 of 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.
authors.affiliation: Huntsman Cancer Institute, University of Utah, Salt Lake City, Utah 84112, USA. anita.kinney@hci.utah.edu
authors.forename: Anita Yeomans
authors.initials: AY
authors.lastname: Kinney
authors.forename: Sara Ellis
authors.initials: SE
authors.lastname: Simonsen
authors.forename: Bonnie Jeanne
authors.initials: BJ
authors.lastname: Baty
authors.forename: Diptasri
authors.initials: D
authors.lastname: Mandal
authors.forename: Susan L
authors.initials: SL
authors.lastname: Neuhausen
authors.forename: Kate
authors.initials: K
authors.lastname: Seggar
authors.forename: Rich
authors.initials: R
authors.lastname: Holubkov
authors.forename: Ken
authors.initials: K
authors.lastname: Smith
mesh_terms: D000328:Adult; D001741:Black or African American; D000368:Aged; D019313:BRCA1 Protein / Q000235:genetics; D001943:Breast Neoplasms / Q000235:genetics*; D005260:Female; D005820:Genetic Testing / Q000523:psychology*; D006801:Humans; D008297:Male; D008875:Middle Aged; D010051:Ovarian Neoplasms / Q000235:genetics*
chemical_list: D019313:BRCA1 Protein