ArticleAmerican journal of medical genetics. Part A2013
Attitudes of African Americans toward return of results from exome and whole genome sequencing.
Article in American journal of medical genetics. Part A, 2013. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 66 papers, 4 of them syntheses 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.
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Who cites it
66 citing papers in PubMed, 4 syntheses or guidelines pooled it.
- Demographic Characteristics Associated With Perceptions of Personal Utility in Genetic and Genomic Testing: A Systematic Review.JAMA network open · 2023Pooled it
- Return of individual research results from genomic research: A systematic review of stakeholder perspectives.PloS one · 2021Pooled it
- Personal utility in genomic testing: a systematic literature review.European journal of human genetics : EJHG · 2017Pooled it
- Stakeholder views on secondary findings in whole-genome and whole-exome sequencing: a systematic review of quantitative and qualitative studies.Genetics in medicine : official journal of the American College of Medical Genetics · 2017Pooled it
- Where to Next for Māori Health Research Review Processes? Insights Into the Indigenous Context: An Integrative Systematic Literature Review.Journal of the Royal Society of New Zealand · 2026Review
- Adolescent and Young Adult Perspectives on Receiving Pathogenic or Likely Pathogenic Results in a Prospective Genomic Screening Clinical Trial.Public health genomics · 2026Article
- Beyond the test: patient-reported concerns and worries regarding kidney conditions andFrontiers in nephrology · 2026Article
- The Genetic Data Market: Institutional Governance of Academic/Industry Research Partnerships for the Public Good.The American journal of bioethics : AJOB · 2025Article
- Engaging for equity: Lessons from a cross-sector partnership addressing prostate cancer risk in the black community.Research involvement and engagement · 2025Article
- Decision-making and role preferences for receiving individual pharmacogenomic research results among participants at a Ugandan HIV research institute.BMC medical ethics · 2025Article
- Evaluating parental personal utility of pediatric genetic and genomic testing in a diverse, multilingual population.HGG advances · 2024Article
- Returning Individual Research Results from Digital Phenotyping in Psychiatry.The American journal of bioethics : AJOB · 2024Article
- Returning personal genetic information on susceptibility to arsenic toxicity to research participants in Bangladesh.Environmental research · 2024Article
- The need for an intersectionality framework in precision medicine research.American journal of human genetics · 2023Article
- Research Participants' Preferences for Individual Results of Pharmacogenomics Research: A Case of a Ugandan HIV Research Institute.Journal of empirical research on human research ethics : JERHRE · 2023Article
- Ethical, legal, and social implications (ELSI) and challenges in the design of a randomized controlled trial to test the online return of cancer genetic research results to U.S. Black women.Contemporary clinical trials · 2023Article
- Return of Results in Genomic Research Using Large-Scale or Whole Genome Sequencing: Toward a New Normal.Annual review of genomics and human genetics · 2023Review
- Future-oriented Emotions and Decisions to Receive Genomic Testing Results Among U.S. Adults of African Ancestry.Annals of behavioral medicine : a publication of the Society of Behavioral Medicine · 2023Article
- "Extremely slow and capricious": A qualitative exploration of genetic researcher priorities in selecting shared data resources.Genetics in medicine : official journal of the American College of Medical Genetics · 2023Article
- Participant views on practical considerations for feedback of individual genetic research results: a case study from Botswana.Global bioethics = Problemi di bioetica · 2023Article
6 more citing papers are in PubMed but not listed here.
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
5 authors.
Funding
Abstract
Exome sequencing and whole genome sequencing (ES/WGS) present patients and research participants with the opportunity to benefit from a broad scope of genetic results of clinical and personal utility. Yet, this potential for benefit also risks disenfranchising populations such as African Americans (AAs) that are already underrepresented in genetic research and utilize genetic tests at lower rates than other populations. Understanding a diverse range of perspectives on consenting for ES/WGS and receiving ES/WGS results is necessary to ensure parity in genomic health care and research. We conducted a series of 13 focus groups (n = 76) to investigate if and how attitudes toward participation in ES/WGS research and return of results from ES/WGS differ between self-described AAs and non-AAs. The majority of both AAs and non-AAs were willing to participate in WGS studies and receive individual genetic results, but the fraction not interested in either was higher in AAs. This is due in part to different expectations of health benefits from ES/WGS and how results should be managed. Our results underscore the need to develop and test culturally tailored strategies for returning ES/WGS results to AAs.
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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.