ArticleGenetics in medicine : official journal of the American College of Medical Genetics2019
Knowledge, motivations, expectations, and traits of an African, African-American, and Afro-Caribbean sequencing cohort and comparisons to the original ClinSeq
Article in Genetics in medicine : official journal of the American College of Medical Genetics, 2019. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 19 papers, 2 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
19 citing papers in PubMed, 2 syntheses or guidelines pooled it, 29 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
- Social Determinants of Genetics Referral and Completion Rates Among Pediatric Neurology Patients.Pediatric neurology · 2025Article
- Publics' knowledge of, attitude to and motivation towards health-related genomics: a scoping review.European journal of human genetics : EJHG · 2024Article
- Derived myeloid lineage induced pluripotent stem as a platform to study human C-C chemokine receptor type 5Δ32 homozygotes.iScience · 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
- Assessing patient-level knowledge of precision medicine in a community health center setting.Journal of community genetics · 2023Article
- Perspectives of diverse Spanish- and English-speaking patients on the clinical use of polygenic risk scores.Genetics in medicine : official journal of the American College of Medical Genetics · 2022Article
- Motivations and concerns of patients considering participation in an implementation study of a hereditary cancer risk assessment program in diverse primary care settings.Genetics in medicine : official journal of the American College of Medical Genetics · 2022Article
- The ACMG SF v3.0 gene list increases returnable variant detection by 22% when compared with v2.0 in the ClinSeq cohort.Genetics in medicine : official journal of the American College of Medical Genetics · 2022Article
- Information Avoidance, Self-affirmation, and Intentions to Receive Genomic Sequencing Results Among Members of an African Descent Cohort.Annals of behavioral medicine : a publication of the Society of Behavioral Medicine · 2022Article
- Dyadic concordance and associations of beliefs with intentions to learn carrier results from genomic sequencing.Journal of behavioral medicine · 2021Article
- Preferences for and acceptability of receiving pharmacogenomic results by mail: A focus group study with a primarily African-American cohort.Journal of genetic counseling · 2021Article
- Engagement and return of results preferences among a primarily African American genomic sequencing research cohort.American journal of human genetics · 2021Article
- Low-level variant calling for non-matched samples using a position-based and nucleotide-specific approach.BMC bioinformatics · 2021Article
- Examining access to care in clinical genomic research and medicine: Experiences from the CSER Consortium.Journal of clinical and translational science · 2021Article
- Article
- Attitudes Toward Genetics and Genetic Testing Among Participants in the Jackson and Framingham Heart Studies.Journal of empirical research on human research ethics : JERHRE · 2019Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
11 authors at 3 institutions in 1 country.
Funding
Abstract
purposeRacial minority populations are underrepresented in genomics research. This study enrolled African-descended individuals in a sequencing study and reported their characteristics.
methodsWe purposively recruited 467 individuals self-identified as African, African American, or Afro-Caribbean to the ClinSeq
resultsRecruitment took five years and 83% of enrollees completed the survey. Participants had modest knowledge about benefits and limitations of sequencing (x̅s = 5.1, ranges: 0-10), and less than the original cohort (x̅ = 7.5 and 7.7, respectively). Common motivations to enroll were learning information relevant to personal health (49%) or family members' health (33%), and most had realistic expectations of sequencing. Like the original cohort, they had high levels of optimism, openness, and resilience.
conclusionEarly adopters may have relatively consistent personality traits irrespective of majority/minority status and recruitment methods, but high levels of genomics knowledge are not universal. Research should determine whether recruitment and consent procedures provide adequate education to promote informed choices and realistic expectations, which are vital to ethical research and increasing genomics research participation in underrepresented communities.
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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.