Decisions to participate in fragile X and other genomics-related research: Native American and African American voices

J Cult Divers. 2009 Fall;16(3):127-35.

Abstract

The lack of adequate minority representation, including Native-Americans (NA) and African-Americans (AA), in health related research is well documented. Nowhere is this truer than in the area of genomics-related research, which is especially troubling as NA and AA have some of the highest rates of overall morbidity and mortality due to genetic diseases.

Objectives: The purpose of this study is to explore factors associated with the under representation of NA and AA adults in genetic research including: (1) decision barriers, (2) the influence of health care networks, (3) recruitment preferences, and (4) health conditions.

Methods: Eight focus groups were conducted, each by led by individuals who shared racial/cultural identification with participants. Adherence to tenants of Community Based Participatory Research (CBPR) was maintained. Qualitative data were analyzed using NVIVO program analyses and the constant comparative method.

Results: Themes supported the efficacy of CBPR to help demolish barriers while facilitating a willingness to participate in genetics-related research.

Conclusions: Community-based approaches may enhance representation of minorities in genomics-related research crucial to eliminating health disparities.

Publication types

  • Research Support, N.I.H., Extramural
  • Research Support, Non-U.S. Gov't

MeSH terms

  • Adolescent
  • Adult
  • Aged
  • Aged, 80 and over
  • Attitude to Health*
  • Black or African American*
  • Female
  • Focus Groups
  • Fragile X Syndrome / genetics
  • Genetic Research*
  • Humans
  • Indians, North American*
  • Male
  • Middle Aged
  • Patient Selection*
  • Pilot Projects
  • United States