Racial differences in enrolment in a cancer genetics registry.
BACKGROUND
Lower enrolment of minorities into research studies has been reported frequently. Most studies have little information about nonparticipants, making it difficult to identify characteristics associated with enrolment and how they might vary by race.


METHODS
Women who had previously participated in a population-based, case-control study of breast cancer in North Carolina were invited to enroll in a cancer genetics registry. Detailed questionnaire data on sociodemographic characteristics and cancer risk factors were available for all women. We compared characteristics of women who agreed to be in the registry with those who were deceased, were unlocatable, or declined enrolment. Unconditional logistic regression analyses were done to identify predictors of enrolment.


RESULTS
Enrolment rates were markedly lower among African Americans than Whites (15% and 36%, respectively) due to both lower contact rates (41% versus 63%) and lower enrolment rates among those contacted (37% versus 58%). Logistic regression models suggested that racial differences in enrolment were not due to socioeconomic characteristics or other cancer risk factors; race was the only significant predictor of enrolment in multivariable models (odds ratio 0.41, 95% confidence interval 0.23-0.72).


CONCLUSIONS
Although all women had previously taken part in a research study, African American women were less likely to enroll in the cancer genetics registry than White women. A possible explanation of these findings is that studies of genetics may present particular concerns for African Americans. Further research is needed to identify attitudes and issues that present barriers to participation among minorities.
Moorman
Patricia G
PG
Cancer Prevention Detection and Control Research Program, Duke University Medical Center, 239 Hanes House, Trent Drive, Box 2949, Durham, NC 27710, USA. patricia.moorman@duke.edu
Skinner
Celette Sugg
CS
Evans
James P
JP
Newman
Beth
B
Sorenson
James R
JR
Calingaert
Brian
B
Susswein
Lisa
L
Crankshaw
T Sydnee
TS
Hoyo
Cathrine
C
Schildkraut
Joellen M
JM
D000328:Adult; D001741:Black or African American / Q000235:genetics* / Q000706:statistics & numerical data; D000704:Analysis of Variance; D001294:Attitude to Health / Q000208:ethnology*; D001943:Breast Neoplasms / Q000208:ethnology* / Q000235:genetics*; D016022:Case-Control Studies; D004522:Educational Status; D005260:Female; D006801:Humans; D016015:Logistic Models; D008875:Middle Aged; D008913:Minority Groups; D018579:Patient Selection; D015995:Prevalence; D011336:Probability; D012042:Registries; D012106:Research / Q000592:standards / Q000639:trends; D018570:Risk Assessment; D012959:Socioeconomic Factors; D011795:Surveys and Questionnaires; D044465:White People / Q000235:genetics* / Q000706:statistics & numerical data