Enrollment and biospecimen collection in a multiethnic family cohort: the Northern California site of the Breast Cancer Family Registry

Cancer Causes Control. 2019 Apr;30(4):395-408. doi: 10.1007/s10552-019-01154-6. Epub 2019 Mar 5.


Purpose: Racial/ethnic minorities are often assumed to be less willing to participate in and provide biospecimens for biomedical research. We examined racial/ethnic differences in enrollment of women with breast cancer (probands) and their first-degree relatives in the Northern California site of the Breast Cancer Family Registry from 1996 to 2011.

Methods: We evaluated participation in several study components, including biospecimen collection, for probands and relatives by race/ethnicity, cancer history, and other factors.

Results: Of 4,780 eligible probands, 76% enrolled in the family registry by completing the family history and risk factor questionnaires and 68% also provided a blood or mouthwash sample. Enrollment was highest (81%) for non-Hispanic whites (NHWs) and intermediate (73-76%) for Hispanics, African Americans, and all Asian American subgroups, except Filipina women (66%). Of 4,279 eligible relatives, 77% enrolled in the family registry, and 65% also provided a biospecimen sample. Enrollment was highest for NHWs (87%) and lowest for Chinese (68%) and Filipinas (67%). Among those enrolled, biospecimen collection rates were similar for NHW, Hispanic, and African American women, both for probands (92-95%) and relatives (82-87%), but lower for some Asian-American subgroups (probands: 72-88%; relatives: 71-88%), foreign-born Asian Americans, and probands those who were more recent immigrants or had low English language proficiency.

Conclusions: These results show that racial/ethnic minority populations are willing to provide biospecimen samples for research, although some Asian American subgroups in particular may need more directed recruitment methods. To address long-standing and well-documented cancer health disparities, minority populations need equal opportunities to contribute to biomedical research.

Keywords: African Americans; Asian Americans; Biospecimen collection; Breast cancer; Epidemiology; Hispanics; Race/ethnicity; Study participation.

MeSH terms

  • Adolescent
  • Adult
  • Asian / statistics & numerical data
  • Black or African American / statistics & numerical data
  • Breast Neoplasms / epidemiology*
  • Breast Neoplasms / ethnology
  • California / epidemiology
  • Female
  • Hispanic or Latino / statistics & numerical data
  • Humans
  • Middle Aged
  • Racial Groups / statistics & numerical data*
  • Registries
  • Risk Factors
  • White People / statistics & numerical data
  • Young Adult