| Ethics of health research in communities: perspectives from the southwestern United States. | |
| | |
MedLine Citation:
|
PMID: 20843885 Owner: NLM Status: MEDLINE |
Abstract/OtherAbstract:
|
PURPOSE: The increasing attention paid to community-based research highlights the question of whether human research protections focused on the individual are adequate to safeguard communities. We conducted a study to explore how community members perceive low-risk health research, the adequacy of human research protection processes, and the ethical conduct of community-based research. METHODS: Eighteen focus groups were conducted among rural and urban Hispanic and Native American communities in New Mexico using a semistructured guide. Group transcriptions were analyzed using iterative readings and coding, with review of the analytic summary by group members. RESULTS: Although participants recognized the value of health research, many also identified several adverse effects of research in their communities, including social (community and individual labeling, stigmatization, and discrimination) and economic (community job losses, increased insurance rates, and loss of community income). A lack of community beneficence was emphasized by participants who spoke of researchers who fail to communicate results adequately or assist with follow-through. Many group members did not believe current human research and data privacy processes were adequate to protect or assist communities. CONCLUSIONS: Ethical review of community-based health research should apply the Belmont principles to communities. 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. Plans for meaningful dissemination of results to communities should be part of the research design. |
| | |
Authors:
|
Robert L Williams; Cathleen E Willging; Gilbert Quintero; Summers Kalishman; Andrew L Sussman; William L Freeman; |
Related Documents
:
|
15195415 - Forests and water--closing the gap between public and science perceptions. 791165 - Oxygen, politics and the american revolution (with a note on the bicentennial of phlogi... 19549775 - Disclosure of research results from cancer genomic studies: state of the science. 16681135 - Ethics of clinical research within a community-academic partnered participatory framework. 23217785 - Clinical pharmacokinetics of antiretroviral drugs in ugandan patients. 19557705 - Methodological considerations for observational studies of acute kidney injury using ex... |
Publication Detail:
|
Type: Journal Article; Research Support, U.S. Gov't, P.H.S. |
Journal Detail:
|
Title: Annals of family medicine Volume: 8 ISSN: 1544-1717 ISO Abbreviation: Ann Fam Med Publication Date: 2010 Sep-Oct |
Date Detail:
|
Created Date: 2010-09-16 Completed Date: 2010-12-01 Revised Date: 2011-07-25 |
Medline Journal Info:
|
Nlm Unique ID: 101167762 Medline TA: Ann Fam Med Country: United States |
Other Details:
|
Languages: eng Pagination: 433-9 Citation Subset: IM |
Affiliation:
|
Department of Family and Community Medicine, University of New Mexico, Albuquerque, New Mexico 87131, USA. rlwilliams@salud.unm.edu |
Export Citation:
|
APA/MLA Format Download EndNote Download BibTex |
| MeSH Terms | |
Descriptor/Qualifier:
|
Communication Community-Based Participatory Research / ethics* Confidentiality / ethics* Female Hispanic Americans Human Experimentation / ethics* Humans Indians, North American Male New Mexico Privacy Qualitative Research |
| Grant Support | |
ID/Acronym/Agency:
|
1 R03 HS013208/HS/AHRQ HHS |
| Comments/Corrections | |
From MEDLINE®/PubMed®, a database of the U.S. National Library of Medicine
Previous Document: Using Learning Teams for Reflective Adaptation (ULTRA): insights from a team-based change management...
Next Document: Continuity and trust in primary care: a qualitative study informed by game theory.