ArticleJournal of general internal medicine2009
Asking the right questions: views on genetic variation research among black and white research participants.
Article in Journal of general internal medicine, 2009. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 15 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
15 citing papers in PubMed.
- Understanding inequities in precision oncology diagnostics.Nature cancer · 2023Review
- Promoting Inclusive Recruitment: a Qualitative Study of Black Adults' Decision to Participate in Genetic Research.Journal of urban health : bulletin of the New York Academy of Medicine · 2022Article
- Factors associated with willingness to provide biospecimens for genetics research among African American cancer survivors.Journal of community genetics · 2019Article
- Factors associated with participation by African Americans in a study of the genetics of glaucoma.Ethnicity & health · 2019Article
- Observational
- Participation in Cancer Pharmacogenomic Studies: A Study of 8456 Patients Registered to Clinical Trials in the Cancer and Leukemia Group B (Alliance).Journal of the National Cancer Institute · 2015Observational
- Physicians' knowledge, beliefs, and use of race and human genetic variation: new measures and insights.BMC health services research · 2014Article
- Perceptions of African-American health professionals and community members on the participation of children and pregnant women in genetic research.Public health genomics · 2014Article
- Enhancing the participation of african americans in health-related genetic research: findings of a collaborative academic and community-based research study.Nursing research and practice · 2013Article
- Attitudes of patients with cancer about personalized medicine and somatic genetic testing.Journal of oncology practice · 2012Article
- African Americans' responses to genetic explanations of lung cancer disparities and their willingness to participate in clinical genetics research.Genetics in medicine : official journal of the American College of Medical Genetics · 2010Article
- The Internet-based MGS2 control sample: self report of mental illness.The American journal of psychiatry · 2010Article
- Biobank Recruitment: Motivations for Nonparticipation.Biopreservation and biobanking · 2009Article
- Studying genetic research participants: lessons from the "Learning About Research in North Carolina" study.Cancer epidemiology, biomarkers & prevention : a publication of the American Association for Cancer Research, cosponsored by the American Society of Preventive Oncology · 2008Article
- Understanding participation by African Americans in cancer genetics research.Journal of the National Medical AssociationArticle
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
backgroundGenetic variation research (GVR) may raise concerns about misuse of information and discrimination. Seemingly contradictory positive views about GVR have also been reported.
objectiveTo dissect this inconsistency, our objectives were to: (1) explore open-ended views of GVR and (2) quantify views of and willingness to participate in GVR by race.
designCross-sectional study.
participants801 African-American and white prior participants in a case-control genetic epidemiology study of colon cancer risks (NCCCS). MEASURES: Qualitative measures evaluated responses to questions about good and bad things about GVR. Quantitative measures evaluated positive and negative perceptions, perceptions of discrimination, and likelihood of future participation by race.
resultsOpen-ended queries about GVR resulted in few "negative" responses. In closed-ended questions, however, African Americans were more likely to feel that such research would: result in higher insurance (41% vs. 30%, p = 0.008), not benefit minorities (29% vs. 14%, p=<0.001), reinforce racism (32% vs. 20%, p = 0.002), and use minorities as guinea pigs (27% vs. 6%, p < 0.001). Overall, after adjustment for potential confounding factors, African-American race remained inversely associated with feeling "very positive" about GVR (46% vs. 57%, p = 0.035). In contrast, African Americans were as likely as whites to express willingness to participate in future GVR studies (46%).
conclusionsOpen-ended questions about GVR were unlikely to spontaneously generate "negative" responses. In contrast, when presented specific examples of potentially negative implications, more respondents agreed, and minorities were more likely to express concerns. This suggests that while participants appear generally positive about GVR, their inability to articulate views regarding these complex concepts may require that researchers engage lay audiences, ensure accurate understanding, and provide them with language to express concerns.
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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.