ArticleAnnals of family medicine
Ethics of health research in communities: perspectives from the southwestern United States.
Article in Annals of family medicine. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 15 papers, 1 of them a synthesis that pooled it.
What it found
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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
15 citing papers in PubMed, 1 synthesis or guideline pooled it.
- A systematic literature review of Native American and Pacific Islanders' perspectives on health data privacy in the United States.Journal of the American Medical Informatics Association : JAMIA · 2020Pooled it
- Urban American Indian and Alaska Native Data Sovereignty: Ethical Issues.American Indian and Alaska native mental health research (Online) · 2021Article
- Contributory factors to the evolution of the concept and practice of informed consent in clinical research: A narrative review.Contemporary clinical trials communications · 2020Review
- Perspectives on communication and engagement with regard to collecting biospecimens and family health histories for cancer research in a rural Alaska Native community.Journal of community genetics · 2019Article
- A Comprehensive Approach to Community Recruitment for Clinical and Translational Research.Journal of clinical and translational science · 2018Article
- "Improving Native American elder access to and use of health care through effective health system navigation".BMC health services research · 2018Review
- Perspectives on Biological Monitoring in Environmental Health Research: A Focus Group Study in a Native American Community.International journal of environmental research and public health · 2018Article
- Challenges in Engaging and Disseminating Health Research Results Among Alaska Native and American Indian People in Southcentral Alaska.American Indian and Alaska native mental health research (Online) · 2018Article
- Ethics Review for a Multi-Site Project Involving Tribal Nations in the Northern Plains.Journal of empirical research on human research ethics : JERHRE · 2016Article
- Establishing community advisory boards for clinical trial research in Malawi: engendering ethical conduct in research.Malawi medical journal : the journal of Medical Association of Malawi · 2013Article
- Navigating the cultural geography of indigenous peoples' attitude toward genetic research: the Ohana (family) heart project.International journal of circumpolar health · 2013Article
- Alaska native people's perceptions, understandings, and expectations for research involving biological specimens.International journal of circumpolar health · 2012Article
- Praxis-based research networks: An emerging paradigm for research that is rigorous, relevant, and inclusive.Journal of the American Board of Family Medicine : JABFMArticle
- Navigating University Openness in Research Policy Inconsistent with Indigenous Data Sovereignty: A Case Analysis.Ethics & human researchArticle
- Cultivating a cycle of trust with diverse communities in practice-based research: a report from PRIME Net.Annals of family medicineArticle
Corrections and comments
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Authors and funding
7 authors.
Funding
Abstract
purposeThe 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.
methodsEighteen 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.
resultsAlthough 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.
conclusionsEthical 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.
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What OpenQuestion holds
Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.