Article Figures & Data
Tables
Community No. of Groups Native Hispanic (urban) 2 Native Hispanic (rural) 2 Immigrant Hispanic (urban) 2 Immigrant Hispanic (rural) 2 Navajo (urban) 2 Navajo (rural) 2 Pueblo (urban) 2 Pueblo (rural) 2 Health care clinicians/staff 2
Additional Files
Supplemental Appendix
Supplemental Appendix. Interview Guide
Files in this Data Supplement:
- Supplemental data: Appendix - PDF file, 6 pages, 156KB
The Article in Brief
Ethics of Health Research in Communities: Perspectives From the Southwestern United States
Robert L. Williams , and colleagues
Background Increasingly, research is conducted in communities and involves community members in the research process. Are existing research protections adequate for this type of research? This study assessed the views of people living in ethnic minority communities in the Southwestern United States about health research.
What This Study Found Human research protections established over the last 60 years to protect individuals during the research process are not adequate to safeguard communities, according to focus groups with Hispanic and Native American community members in New Mexico. Although participants recognized the value of health research, many also identified adverse social (labeling, stigmatization, and discrimination) and economic (job losses, increased insurance rates, loss of income) effects of research in their communities. Participants also emphasized no or ineffective return of information about research results to the communities.
Implications
- According to the authors, these findings support the addition of a fourth principle (requiring respect for communities) to the Belmont Report, which provides the ethical foundation for all current human research. They assert that the issues raised also call for more broadly applying the three principles of the Belmont Report (respect for persons, beneficence, and justice) to communities as well as individuals.
- The authors also conclude that researchers should adopt additional approaches to community-based research by engaging communities as active partners throughout the research process, focusing on community priorities, and taking extra precautions to assure individual and community privacy. Furthermore, plans for disseminating meaningful results to communities should be part of the research design.
