Recruiting African American women to participate in hereditary breast cancer research.
OBJECTIVE
This study evaluated the process of recruiting African American women to participate in genetic counseling research for BRCA1 and BRCA2 (BRCA1/2) mutations with respect to referral, study enrollment, and participation in genetic counseling.


METHODS
African American women (n = 783) were referred for study enrollment.


RESULTS
Of 783 referrals, 164 (21%) women were eligible for enrollment. Eligible women were most likely to be referred from oncology clinics (44%) and were least likely to be referred from general medical practices (11%; chi(2) = 96.80; P = .0001). Overall, 62% of eligible women enrolled onto the study and 50% of enrollees completed genetic counseling. Women with a stronger family history of cancer (odds ratio [OR] = 3.18; 95% CI, 1.36 to 7.44; P = .01) and those referred from oncology clinics and community oncology resources (OR = 2.97; 95% CI, 1.34 to 6.58; P = .01) were most likely to enroll onto the study. Referral from oncology clinics was associated significantly with participation in genetic counseling (OR = 5.46; 95% CI, 1.44 to 20.60; P = .01).


CONCLUSIONS
Despite receiving a large number of referrals, only a small subset of women were eligible for enrollment. Oncology settings were the most effective at identifying eligible African American women and general medical practices were the least effective. Factors associated with enrollment included having a stronger family history of cancer and being referred from oncology clinics and community oncology resources. Referral from oncology clinics was the only factor associated significantly with participation in genetic counseling. Education about hereditary breast cancer may be needed among primary care providers to enhance appropriate referral of African American women to genetic counseling for BRCA1/2 mutations.
Halbert
Chanita Hughes
CH
Abramson Cancer Center, Department of Psychiatry, University of Pennsylvania, Philadelphia, 19104, USA. Chanita@mail.med.upenn.edu
Brewster
Kiyona
K
Collier
Aliya
A
Smith
Chachira
C
Kessler
Lisa
L
Weathers
Benita
B
Stopfer
Jill E
JE
Domchek
Susan
S
Wileyto
E Paul
EP
D001294:Attitude to Health / Q000208:ethnology; D044383:Black People / Q000235:genetics / Q000523:psychology / Q000706:statistics & numerical data*; D001943:Breast Neoplasms / Q000208:ethnology* / Q000235:genetics* / Q000523:psychology; D005260:Female; D019398:Genes, BRCA1; D024522:Genes, BRCA2; D005817:Genetic Counseling / Q000523:psychology / Q000706:statistics & numerical data*; D006801:Humans; D008875:Middle Aged; D009154:Mutation; D018579:Patient Selection; D012017:Referral and Consultation / Q000706:statistics & numerical data*; D012307:Risk Factors; D012959:Socioeconomic Factors; D001741:Black or African American