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Journal of Community Genetics

, Volume 6, Issue 1, pp 39–45 | Cite as

“It takes a village”: multilevel approaches to recruit African Americans and their families for genetic research

  • Heather M. Ochs-Balcom
  • Lina Jandorf
  • Youjin Wang
  • Detric Johnson
  • Veronica Meadows Ray
  • Mattye J. Willis
  • Deborah O. Erwin
Original Article

Abstract

One barrier to searching for novel mutations in African American families with breast cancer is the challenge of effectively recruiting families—affected and non-affected relatives—into genetic research studies. Using a community-based participatory research (CBPR) orientation, we incorporated several evidence-based approaches through an iterative fashion to recruit for a breast cancer genetic epidemiology study in African Americans. Our combined methods allowed us to successfully recruit 341 African American women (247 with breast cancer and 94 relatives without breast cancer) from 127 families. Twenty-nine percent of participants were recruited through National Witness Project (NWP) sites, 11 % came from in-person encounters by NWP members, 34 % from the Love Army of Women, 24 % from previous epidemiologic studies, and 2 % from a support group. In terms of demographics, our varied recruitment methods/sources yielded samples of African American women that differ in terms of several sociodemographic factors such as education, smoking, and BMI, as well as family size. To successfully recruit African American families into epidemiological research, investigators should include community members in the recruitment processes, be flexible in the adoption of multipronged, iterative methods, and provide clear communication strategies about the underlying benefit to potential participants. Our results enhance our understanding of potential benefits and challenges associated with various recruitment methods. We offer a template for the design of future studies and suggest that generalizability may be better achieved by using multipronged approaches.

Keywords

African American Genetic epidemiology Community-based participatory research (CBPR) Breast cancer 

Notes

Acknowledgments

Drs. Ochs-Balcom and Erwin and Ms. Johnson are supported by a grant from Susan G. Komen for the Cure, KG090937 and NIH/NCI/CRCHD U54CA153598. We wish to thank the NWP for helping us with this work, the Buffalo WP, Rosa Bordonaro, Mary Crawford, Anne Weaver, and the rest of the Jewels team for their tireless efforts. Others who were instrumental in study recruitment include Greg Ciupak and Dr. Christine Ambrosone (Women’s Circle of Health Study), Dr. Susan Kadlubar (Spit for the Cure study), Drs. Cheryl Thompson and Li Li (Breast Density Study), Jennie Ellison (GATE/TACT study), and Teri Deans-McFarlane. Thank you to the Dr. Susan Love Research Foundation’s Army of Women Program. We also wish to thank all of the families who participated in our study.

Conflict of interest

The authors declare that they have no conflict of interest.

Ethical standards

All human subjects research was approved by the University at Buffalo Health Sciences Institutional Review Board and is in full compliance with the current laws that protect human subjects in the USA.

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Copyright information

© Springer-Verlag Berlin Heidelberg 2014

Authors and Affiliations

  • Heather M. Ochs-Balcom
    • 1
  • Lina Jandorf
    • 2
  • Youjin Wang
    • 1
  • Detric Johnson
    • 3
    • 4
    • 5
  • Veronica Meadows Ray
    • 4
  • Mattye J. Willis
    • 5
  • Deborah O. Erwin
    • 3
  1. 1.Department of Epidemiology and Environmental Health, School of Public Health and Health ProfessionsUniversity at BuffaloBuffaloUSA
  2. 2.Department of Oncological SciencesIcahn School of Medicine at Mount SinaiNew YorkUSA
  3. 3.Office of Cancer Health Disparities Research, Department of Cancer Prevention and Population SciencesRoswell Park Cancer InstituteBuffaloUSA
  4. 4.Witness Project of BuffaloBuffaloUSA
  5. 5.The National Witness Project®BuffaloUSA

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