Establishing a community partnership to optimize recruitment of African American pedigrees for a genetic epidemiology study
Open accessAbstract
We developed a breast cancer genetic epidemiology study in collaboration with a community partnership to optimize recruitment and participation of African American women. We recognized that recruitment of relatives for a family-based study was a unique challenge in this minority group in the USA. Through an established partnership with The National Witness Project, we convened focus groups to identify potential recruitment challenges and issues related to decisions about study participation that may be unique to African Americans and family-based recruitment. Using the PEN-3 model, we analyzed qualitative data and applied the thematic findings to our recruitment protocol in order to mitigate potential recruitment challenges. The most relevant positive themes included a need for research and education and potential benefit to future generations. Negative themes included communication barriers in sharing disease status within a family and historical issues such as fatalistic attitudes and shamefulness of cancer. Collaboration with community partners allowed for development of culturally appropriate recruitment strategies for African American breast cancer survivors and their family members for a genetic epidemiology study. Understanding factors unique to family-based recruitment in the USA is a significant factor in enhancing participation of under-represented minorities in future genetic studies.
The claims and statistics of this paper haven’t been checked yet.
Run the check — free, no account needed. It reads the open-access text and checks the sources it cites.
Integrity signals
Registry
Cites
Statistics
Claims the paper makes
The claims and statistics of this paper haven’t been checked yet.
Run the check — free, no account needed. It reads the open-access text and checks the sources it cites.
Claims other papers make about this one
Each is checked against this paper’s own text: does it say what the citing paper says it does?
In tailoring their overall recruitment and study protocol, Ochs-Balcom et al. reinforced positive themes and revised negative themes in a variety of ways.
“In tailoring their overall recruitment and study protocol, the authors reinforced positive themes and revised negative themes in a variety of ways.”
From Framing the impact of culture on health: a systematic review of the PEN-3 cultural model and its application in public health research and interventions (2014) · cites this paper as Ochs-Balcom, Rodriguez, and Erwin 2011
Ochs-Balcom, Rodriguez, and Erwin (2011) utilized the PEN-3 model to identify positive and negative themes relevant to establishing community partnership to optimize recruitment of African-American women in a breast cancer epidemiology study.
“Ochs-Balcom, Rodriguez, and Erwin (2011) utilized the PEN-3 model to identify positive and negative themes relevant to establishing community partnership to optimize recruitment of African-American women in a breast cancer epidemiology study.”
From Framing the impact of culture on health: a systematic review of the PEN-3 cultural model and its application in public health research and interventions (2014) · cites this paper as Ochs-Balcom, Rodriguez, and Erwin 2011
In Ochs-Balcom et al. (2011), positive themes included the need for more information about breast cancer and potential benefits to younger generations, while negative themes included lack of knowledge regarding research participation, issues related to confidentiality of data, and breast cancer research in general.
“While the need for more information about breast cancer and potential benefits to younger generations were among the positive themes identified, negative themes included lack of knowledge regarding research participation, issues related to confidentiality of data, and breast cancer research in general (Ochs-Balcom, Rodriguez, and Erwin 2011).”
From Framing the impact of culture on health: a systematic review of the PEN-3 cultural model and its application in public health research and interventions (2014) · cites this paper as Ochs-Balcom, Rodriguez, and Erwin 2011
Self-check
Percentages, sums and reported differences re-computed from the paper’s own numbers.
The self-check needs the paper’s full text.
Cites
No references could be resolved yet.
Research works printed but not linked: 10
- Airhinenbuwa CO (1995) Health and culture. Sage, Thousand Oaks Clerget-Darpoux F, Elston RC (2007) Are linkage analysis and the collection of family data dead? Prospects for family studies in the age of genome-wide association. Hum Hered 64(2):91 -96
- Corbie-Smith G, Thomas SB, Williams MV, Moody-Ayers S (1999) Attitudes and beliefs of African Americans toward participation in medical research. J Gen Intern Med 14(9): 537 -546
- Eley JW, Hill HA, Chen VW, Austin DF, Wesley MN, Muss HB, Greenberg RS, Coates RJ, Correa P, Redmond CK et al (1994) Racial differences in survival from breast cancer. Results of the National Cancer Institute Black/White Cancer Survival Study. JAMA 272(12):947 -954
- Elledge RM, Clark GM, Chamness GC, Osborne CK (1994) Tumor biologic factors and breast cancer prognosis among white, Hispanic, and black women in the United States. J Natl Cancer Inst 86(9):705 -712
- Erwin DO, Spatz TS, Turturro CL (1992) Development of an AfricanAmerican role model intervention to increase breast selfexamination and mammography. J Cancer Educ 7(4):311 -319
- Erwin DO, Johnson VA, Feliciano-Libid L, Zamora D, Jandorf L (2005) Incorporating cultural constructs and demographic diversity in the research and development of a Latina breast and cervical cancer education program. J Cancer Educ 20(1):39 -44
- Erwin DO, Trevino M, Saad-Harfouche FG, Rodriguez EM, Gage E, Jandorf L (2010) Contextualizing diversity and culture within cancer control interventions for Latinas: changing interventions, not cultures. Soc Sci Med 71(4):693 -701
- Hartz SM, Johnson EO, Saccone NL, Hatsukami D, Breslau N, Bierut LJ (2011) Inclusion of African Americans in genetic studies: what is the barrier? Am J Epidemiol. doi:10.1093/aje/kwr084 · DOI
- Hughes C, Peterson SK, Ramirez A, Gallion KJ, McDonald PG, Skinner CS, Bowen D (2004) Minority recruitment in hereditary breast cancer research. Cancer Epidemiol Biomarkers Prev 13 (7):1146 -1155
- Kass NE, Sugarman J, Faden R, Schoch-Spana M (1996) Trust, the fragile foundation of contemporary biomedical research. Hastings Cent Rep 26(5):25 -29
Cited by
Sorted by citations
Iwelunmor, J., Newsome, V., & Airhihenbuwa, C. O. (2014) · Ethnicity & Health · doi:10.1080/13557858.2013.857768 · Cited by 259 · see citing works
“…cancer and potential benefits to younger generations were among the positive themes identified, negative themes included lack of knowledge regarding research participation, issues related to confidentiality of data, and breast cancer research in general (Ochs-Balcom, Rodriguez, and Erwin 2011).”
BackgroundMethodInfluential
- Authors
- Ochs-Balcom, H. M., Rodriguez, E. M., & Erwin, D. O.
- Affiliations
- University of Florida Health (US)
- Roswell Park Comprehensive Cancer Center (US)
- Venue
- Journal of Community Genetics
- Published
- 2011-07-09
- Volume
- 2
- Issue
- 4
- Pages
- 223-231
- ISSN
- 1868-310X (ISSN-L)
- 1868-6001
- PMC
- PMC3215785
- OpenAlex
- W2094662073
- Cited by
- 16
- References
- 0
- Citations by year
- 2025: 1 · 2023: 2 · 2022: 2 · 2021: 1 · 2020: 2 · 2019: 1 · 2018: 2 · 2014: 1 · 2013: 3 · 2012: 1
- FWCI
- 1.57
- Type
- journal article
- Language
- en
- Open access
- green
- www.ncbi.nlm.nih.gov
- Licence
- www.springer.com/tdm (tdm)
- Locations
- Journal of Community Genetics (publishedVersion)
- Europe PMC (PubMed Central) (publishedVersion)
- PubMed Central (publishedVersion)
- PubMed (publishedVersion)
- Funders
- Susan G. Komen
- National Cancer Institute (U54CA153598, K07CA136969)
- Topics
- Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Ethics in Clinical Research
- Life Sciences › Biochemistry, Genetics and Molecular Biology › Genetics › BRCA gene mutations in cancer
- Life Sciences › Biochemistry, Genetics and Molecular Biology › Genetics › Race, Genetics, and Society
- Keywords
- breast cancer, African American women, community partnerships, research participation, PEN-3 model, underrepresented minorities, breast cancer survivors
About these checks
Registry, retraction, Cites and statistics results are computed, not judged, with one exception: a printed reference that no index lists is read once by a model before it counts as a citation error. Claims are extracted by a model and kept only when their quote appears verbatim in the text; each cited source is then checked, with a model’s help, for whether it says what the claim relies on. Those verdicts can be wrong — read the claim’s quote and the cited source before relying on one.
Statistics and arithmetic are recomputed, not judged.
Confidence bands are shown only for fields calibrated on our annotated test set. None is calibrated yet, so no band is shown.
What counts as a claim ›How we measure confidence ›How we check this ›
Are you an author, or do you see a problem with this page? Request a review
