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

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...

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Bibliographic Details
Published in:Cancer causes & control 2019-04, Vol.30 (4), p.395-408
Main Authors: John, Esther M., Sangaramoorthy, Meera, Koo, Jocelyn, Whittemore, Alice S., West, Dee W.
Format: Article
Language:English
Subjects:
Adolescent
Adult
African Americans - statistics & numerical data
Asian Americans
Asian Americans - statistics & numerical data
Biomedical and Life Sciences
Biomedical research
Biomedicine
Breast cancer
Breast Neoplasms - epidemiology
Breast Neoplasms - ethnology
California - epidemiology
Cancer
Cancer Research
Continental Population Groups - statistics & numerical data
English language
Enrollments
Epidemiology
European Continental Ancestry Group - statistics & numerical data
Female
Genetics
Hematology
Hispanic Americans
Hispanic Americans - statistics & numerical data
Humans
Immigrants
Middle Aged
Minority & ethnic groups
Mouthwashes
Oncology
ORIGINAL PAPER
Populations
Public Health
Registries
Risk analysis
Risk Factors
Subgroups
Young Adult
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Summary: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.
ISSN:0957-5243
1573-7225
DOI:10.1007/s10552-019-01154-6