ArticleAmerican journal of human genetics2021
Engagement and return of results preferences among a primarily African American genomic sequencing research cohort.
Article in American journal of human genetics, 2021. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 14 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.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
14 citing papers in PubMed, 2 syntheses or guidelines pooled it, 20 citations in OpenAlex.
- Strategies to facilitate the report-back of research results: a systematic review of methods and evaluations.Environmental health : a global access science source · 2026Pooled it
- Attitudes and beliefs regarding race-targeted genetic testing of Black people: A systematic review.Journal of genetic counseling · 2023Pooled it
- Recommendations for return of secondary genomic findings in observational cohort studies.Nature genetics · 2026Review
- Community perspectives on the return of research results and ownership of data and specimens for brain tumor genomic research.SSM. Qualitative research in health · 2026Article
- The HEALthy Brain and Child Development Study (HBCD) experience: Recruiting and retaining diverse families in a longitudinal, multi-method early childhood study.Developmental cognitive neuroscience · 2024Article
- Perceptions and beliefs of community gatekeepers about genomic risk information in African cleft research.BMC public health · 2024Article
- Views of adults living with sickle cell disease on the theoretical return of secondary genomic findings.Genetics in medicine : official journal of the American College of Medical Genetics · 2024Article
- Effectiveness of multimodal participant recruitment in SPARK, a large, online longitudinal research study of autism.Journal of clinical and translational science · 2024Article
- Return of Individual Research Results: Participant Perspectives in a Longitudinal Community-Based Sample.Journal of empirical research on human research ethics : JERHRE · 2023Article
- Returning study results to research participants: Data access, format, and sharing preferences.International journal of medical informatics · 2023Article
- Addressing underrepresentation in genomics research through community engagement.American journal of human genetics · 2022Review
- 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
- Interrogating the Value of Return of Results for Diverse Populations: Perspectives from Precision Medicine Researchers.AJOB empirical bioethicsArticle
- Misaligned Expectations: Motivations of Medically Underserved People to Enroll in the All of Us Research Program.Ethics & human researchArticle
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
8 authors at 3 institutions in 1 country.
Funding
Abstract
Genomics researchers are increasingly interested in what constitutes effective engagement of individuals from underrepresented groups. This is critical for longitudinal projects needed to inform the implementation of precision medicine. Return of results is one opportunity for engagement. The aims of this study were to determine participant perspectives on optimal engagement strategies and priorities for return of results and the extent to which focus groups were an effective modality for gathering input on these topics. We conducted six professionally moderated focus groups with 49 participants in a genomics research study. Transcripts from audio-recorded sessions were coded by two researchers and themes were discussed with the wider research team. All groups raised the issue of mistrust. Individuals participated nonetheless to contribute their perspectives and benefit their community. Many group members preferred engagement modalities that are offered to all participants and allow them to share the nuances of their perspectives over the use of participant representatives and surveys. All groups created a consensus ranking for result return priorities. Results for life-threatening conditions were the highest priority to return, followed by those related to treatable conditions that affect physical or mental health. We advocate for engagement strategies that reach as many participants as possible and allow them to share their perspectives in detail. Such strategies are valued by participants, can be effective for developing return of results policies, and may help institutions become more trustworthy.
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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.