ArticlePublic health genomics2011
Patient perspectives on group benefits and harms in genetic research.
Article in Public health genomics, 2011. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 21 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
21 citing papers in PubMed, 1 synthesis or guideline pooled it, 33 citations in OpenAlex.
- A systematic literature review of individuals' perspectives on privacy and genetic information in the United States.PloS one · 2018Pooled it
- Predictors of consent to pharmacogenomics testing in the IDEAL study.Pharmacogenetics and genomics · 2013Trial
- Consideration and Disclosure of Group Risks in Genomics and Other Data-Centric Research: Does the Common Rule Need Revision?The American journal of bioethics : AJOB · 2025Article
- Learning from Black/African American Participants: Applying the Integrated Behavioral Model to Assess Recruitment Strategies for a Glaucoma Genetic Study.Health communication · 2022Article
- The difficulties of broad data sharing in genomic medicine: Empirical evidence from diverse participants in prenatal and pediatric clinical genomics research.Genetics in medicine : official journal of the American College of Medical Genetics · 2022Article
- High Acceptability of Donating Hair and Other Biological Samples for Research Among People Living with HIV in an Outpatient Clinic in Lagos, Nigeria.AIDS research and human retroviruses · 2021Article
- Obligations of the "Gift": Reciprocity and Responsibility in Precision Medicine.The American journal of bioethics : AJOB · 2021Article
- Engaging publics in biobanking and genetic research governance - a literature review towards informing practice in India.Wellcome open research · 2021Article
- Responsiveness and adaptability in community engaged biobanking research: experiences from a Hispanic community.Journal of community genetics · 2019Article
- Attitudes of publics who are unwilling to donate DNA data for research.European journal of medical genetics · 2019Article
- A Review of African Americans' Beliefs and Attitudes About Genomic Studies: Opportunities for Message Design.Frontiers in genetics · 2019Review
- African American Living Donors' Attitudes About APOL1 Genetic Testing: A Mixed Methods Study.American journal of kidney diseases : the official journal of the National Kidney Foundation · 2018Article
- Precisely Where Are We Going? Charting the New Terrain of Precision Prevention.Annual review of genomics and human genetics · 2017Review
- Relevant Information and Informed Consent in Research: In Defense of the Subjective Standard of Disclosure.Science and engineering ethics · 2017Article
- Prioritizing Approaches to Engage Community Members and Build Trust in Biobanks: A Survey of Attitudes and Opinions of Adults within Outpatient Practices at the University of Maryland.Journal of personalized medicine · 2015Article
- Gene-environment interactions and health inequalities: views of underserved communities.Journal of community genetics · 2013Article
- Evolving approaches to the ethical management of genomic data.Trends in genetics : TIG · 2013Review
- Ethical and legal implications of whole genome and whole exome sequencing in African populations.BMC medical ethics · 2013Article
- Attitudes of African Americans toward return of results from exome and whole genome sequencing.American journal of medical genetics. Part A · 2013Article
- Engaging African-Americans about biobanks and the return of research results.Journal of community genetics · 2012Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
4 authors at 4 institutions in 1 country.
Funding
Abstract
backgroundIt is unclear how the possible effects of genetic research on socially identifiable groups may impact patient willingness to donate biological samples for future genetic studies.
methodsTelephone interviews with patients at 5 academic medical centers in the U.S. examined how patients' beliefs about benefits and harms to ones racial or ethnic group shape decisions to participate in genetic research.
resultsOf the 1,113 patients who responded to questions about group harms and benefits, 61% of respondents indicated that potential benefits to their own racial or ethnic group would be a big or moderate part of their decision to donate a sample for genetic research. 63% of black respondents and 57% of white respondents indicated that they were 'very' or 'moderately concerned' about genetic research findings being used to discriminate against people by race or ethnicity. 64% of black and 34% of white respondents reported that their willingness to donate a blood sample would be substantially reduced due to these concerns.
conclusionOur findings suggest that a key factor in many patients' decisions to donate samples for genetic research is how those studies may impact identifiable racial and ethnic groups. Given the importance of these considerations to many patients, our study highlights a need to address patients' concerns about potential group benefits and harms in the design of future research studies and DNA biobanks.
Indexed as
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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.