Paper

Strategies and Stakeholders: Minority Recruitment in Cancer Genetics Research
Rosalina D. James^a, Joon-Ho Yu^b, Nora B. Henrikson^b, Deborah J. Bowen^c, Stephanie M. Fullerton^{a, b}, for the Health Disparities Working Group

^aDepartment of Medical History and Ethics and Genome Sciences,
^bInstitute for Public Health Genetics, and
^cSocial and Behavioral Sciences, School of Public Health, Boston University, Boston, Mass., USA

Address of Corresponding Author

Community Genet 2008;11:241-249 (DOI: 10.1159/000116878)

  Key Words

• Cancer Genetics Network
• Minority recruitment
• Cancer

  Abstract

The Cancer Genetics Network (CGN) is one of a growing number of large-scale registries designed to facilitate investigation of genetic and environmental contributions to health and disease. Despite compelling scientific and social justice arguments that recommend diverse participation in biomedical research, members of ethnic minority groups continue to be chronically underrepresented in such projects. The CGN studies reported in this issue used strategies well documented to increase minority participation in research activities, including use of community-targeted materials, addressing community trust concerns, and the adoption of personalized and flexible research protocols. Here, we review the outcome of these efforts to increase minority recruitment to the CGN, and ask what lessons the findings suggest for future minority recruitment initiatives.

Copyright © 2008 S. Karger AG, Basel

  Author Contacts

Rosalina D. James
University of Washington, Medical History and Ethics
Box 357120
Seattle, WA 98195-7120 (USA)
Tel. +1 206 616 1453, Fax +1 206 616 4978, E-Mail rdjames@u.washington.edu

  Article Information

Members of the Health Disparities Working Group (Center for Genomics and Health Care Equality, University of Washington, Seattle, Wash.) are, in alphabetical order: Llilda Barata, Deborah J. Bowen, Wylie Burke, Leah Ceccarelli, Julia Crouch, Karen L. Edwards (Co-Chair), Stephanie Malia Fullerton (Co-Chair), Danielle Frank, Kelly Fryer-Edwards, Marisa Gallo, Julie N. Harris, Nora B. Henrikson, Suzanne Holland, Rosalina D. James, Patricia C. Kuszler, Nancy Press, and Joon-Ho Yu.

Number of Print Pages : 9
Number of Figures : 0, Number of Tables : 1, Number of References : 56