ArticleJournal of community genetics2013
Willingness to participate in genomics research and desire for personal results among underrepresented minority patients: a structured interview study.
Article in Journal of community genetics, 2013. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 58 papers, 2 of them syntheses that pooled it.
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
58 citing papers in PubMed, 2 syntheses or guidelines pooled it, 105 citations in OpenAlex.
- Attitudes and beliefs regarding race-targeted genetic testing of Black people: A systematic review.Journal of genetic counseling · 2023Pooled it
- Return of individual research results from genomic research: A systematic review of stakeholder perspectives.PloS one · 2021Pooled it
- Establishment of a cohort for deep phenotyping of the immune response to influenza vaccination among elderly individuals recruited from the general population.Human vaccines & immunotherapeutics · 2017Trial
- "I make my own decisions": Views on precision medicine research participation decisions from adults with intellectual disability.HGG advances · 2026Article
- Designing inclusive newborn sequencing research: insights from parents in underrepresented communities.BMC medical genomics · 2026Article
- Addressing genetic discrimination and its stigmatizing effects through human rights.Journal of community genetics · 2026Article
- Genomic testing in gamete donors: clinicians' perspectives on recontact and pre-donation genetic counseling.Journal of assisted reproduction and genetics · 2026Article
- Who is Willing to Participate in Genetic Research? Exploring Barriers and Predictors.Behavior genetics · 2025Article
- Review
- Latin American Trans-ancestry INitiative for OCD genomics (LATINO): Study protocol.American journal of medical genetics. Part B, Neuropsychiatric genetics : the official publication of the International Society of Psychiatric Genetics · 2024Article
- Exploring biorepository donation patterns, experiences, and recommendations: a mixed-methods study among Appalachian adults enrolled in a sugary drink reduction program.Frontiers in public health · 2024Article
- Benefits and concerns of expanded carrier screening: what do pregnant Latina women in Texas think?Journal of community genetics · 2023Article
- Advancing the communication of genetic risk for cardiometabolic diseases: a critical interpretive synthesis.BMC medicine · 2023Article
- The Role of Transportation in the Enrollment of Elderly African Americans into Exercise and Memory Study: GEMS Study.Journal of racial and ethnic health disparities · 2023Article
- Investigating people's attitudes towards participating in longitudinal health research: an intersectionality-informed perspective.International journal for equity in health · 2023Article
- Determinants of participation in glaucoma genomic research in South East Nigeria: A cross-sectional analytical study.PloS one · 2023Article
- Barriers to and solutions for representative inclusion across the lifespan and in life course research: The need for structural competency highlighted by the COVID-19 pandemic.Journal of clinical and translational science · 2023Review
- Beliefs and willingness towards participating in genetic testing for depression in low-income and racial/ethnic minority mothers at-risk.Archives of psychiatric nursing · 2022Article
- Attitudes about involvement in hypothetical clinical trial protocols in Mexican and Mexican-American at risk for autosomal dominant Alzheimer's disease.Alzheimer's research & therapy · 2022Article
- Precision medicine from a citizen perspective: a survey of public attitudes towards pharmacogenomics in Flanders.BMC medical genomics · 2022Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
9 authors at 2 institutions in 1 country.
Funding
Abstract
Patients from traditionally underrepresented communities need to be involved in discussions around genomics research including attitudes towards participation and receiving personal results. Structured interviews, including open-ended and closed-ended questions, were conducted with 205 patients in an inner-city hospital outpatient clinic: 48 % of participants self-identified as Black or African American, 29 % Hispanic, 10 % White; 49 % had an annual household income of <$20,000. When the potential for personal results to be returned was not mentioned, 82 % of participants were willing to participate in genomics research. Reasons for willingness fell into four themes: altruism; benefit to family members; personal health benefit; personal curiosity and improving understanding. Reasons for being unwilling fell into five themes: negative perception of research; not personally relevant; negative feelings about procedures (e.g., blood draws); practical barriers; and fear of results. Participants were more likely to report that they would participate in genomics research if personal results were offered than if they were not offered (89 vs. 62 % respectively, p < 0.001). Participants were more interested in receiving personal genomic risk results for cancer, heart disease and type 2 diabetes than obesity (89, 89, 91, 80 % respectively, all p < 0.001). The only characteristic consistently associated with interest in receiving personal results was disease-specific worry. There was considerable willingness to participate in and desire for personal results from genomics research in this sample of predominantly low-income, Hispanic and African American patients. When returning results is not practical, or even when it is, alternatively or additionally providing generic information about genomics and health may also be a valuable commodity to underrepresented minority and other populations considering participating in genomics research.
Identifiers
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.