ArticleAmerican journal of human genetics1999
The role of community review in evaluating the risks of human genetic variation research.
Article in American journal of human genetics, 1999. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 31 papers.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
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
31 citing papers in PubMed.
- Cultural, ethical, legal, and social considerations in genomics research with Indigenous Peoples: A scoping review.European journal of human genetics : EJHG · 2026Article
- Community engagement in genetics and genomics research: a qualitative study of the perspectives of genetics and genomics researchers in Uganda.BMC medical ethics · 2024Article
- Transgender identity genetic research: Attitudes, opinions & beliefs among members of the transgender and gender diverse communities.International journal of transgender health · 2024Article
- Survey on Using Ethical Principles in Environmental Field Research with Place-Based Communities.Science and engineering ethics · 2019Article
- Engaging rural communities in genetic research: challenges and opportunities.Journal of community genetics · 2017Article
- Community dissemination and genetic research: moving beyond results reporting.American journal of medical genetics. Part A · 2015Article
- Promoting human subjects training for place-based communities and cultural groups in environmental research: curriculum approaches for graduate student/faculty training.Science and engineering ethics · 2015Article
- Personal genomic information management and personalized medicine: challenges, current solutions, and roles of HIM professionals.Perspectives in health information managemen · 2014Article
- Are changes to the common rule necessary to address evolving areas of research? A case study focusing on the human microbiome project.The Journal of law, medicine & ethics : a journal of the American Society of Law, Medicine & Ethics · 2013Article
- The development of the Bronx Community Research Review Board: a pilot feasibility project for a model of community consultation.Progress in community health partnerships : research, education, and action · 2013Article
- Citizens in the commons: blood and genetics in the making of the civic.Contemporary South Asia · 2013Article
- Community engagement about genetic variation research.Population health management · 2012Article
- 2010 Presidential Address: Culture: the silent language geneticists must learn--genetic research with indigenous populations.American journal of human genetics · 2011Article
- Patient perspectives on group benefits and harms in genetic research.Public health genomics · 2011Article
- Confronting real time ethical, legal, and social issues in the Electronic Medical Records and Genomics (eMERGE) Consortium.Genetics in medicine : official journal of the American College of Medical Genetics · 2010Article
- How ethical is your clinical trial?International journal of clinical practice · 2010Article
- Experiences with community engagement and informed consent in a genetic cohort study of severe childhood diseases in Kenya.BMC medical ethics · 2010Article
- Ethical aspects of genome diversity research: genome research into cultural diversity or cultural diversity in genome research?Medicine, health care, and philosophy · 2009Review
- Asking the right questions: views on genetic variation research among black and white research participants.Journal of general internal medicine · 2009Article
- Race and ancestry in biomedical research: exploring the challenges.Genome medicine · 2009Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
6 authors.
Funding
Abstract
The practicality and moral value of community review of human genetic research has become a focus of debate. Examples from two Native American communities are used to address four aspects of that debate: (1) the value of community review in larger, geographically dispersed populations; (2) the identification of culturally specific risks; (3) the potential conflict between individual and group assessments of research-related risks; and (4) the confusion of social categories with biological categories. Our experiences working with these two communities suggest that: (1) successful community review may require the involvement of private social units (e.g., families); (2) culturally specific implications of genetic research may be identifiable only by community members and are of valid concern in their moral universes; (3) community concerns can be incorporated into existing review mechanisms without necessarily giving communities the power to veto research proposals; and (4) the conflation of social and biological categories presents recruitment problems for genetic studies. These conclusions argue for the use of community review to identify and minimize research-related risks posed by genetic studies. Community review also can assist in facilitating participant recruitment and retention, as well as in developing partnerships between researchers and communities.
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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.