Evidence map›Paper›PMID 31867882›Full record

SynthesisMolecular genetics & genomic medicine2020

The role of race and ethnicity in views toward and participation in genetic studies and precision medicine research in the United States: A systematic review of qualitative and quantitative studies.

Elena R Fisher, Rebekah Pratt, Riley Esch, Megan Kocher, Katie Wilson, Whiwon Lee, Heather A Zierhut

Abstract readSystematic Review
In one paragraph

Synthesis in Molecular genetics & genomic medicine, 2020. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 57 papers, 4 of them syntheses that pooled it.

0numbers the graph read from it
0cells of the map it votes in
57citing papers in PubMed, 4 pooled it
–field-weighted citation impact
1 · What the graph read from 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.

2 · The registry

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.

3 · Its place in the literature

Who cites it

57 citing papers in PubMed, 4 syntheses or guidelines pooled it.

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  18. How is Value Defined in Molecular Testing in Cancer? A Scoping Review.Applied health economics and health policy · 2025
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4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

7 authors.

Elena R FisherDepartment of Genetics, Cell Biology, and Development, University of Minnesota, Minneapolis, MN, USA.ORCID 0000-0002-7560-1826
Rebekah PrattDepartment of Family Medicine and Community Health, University of Minnesota, Minneapolis, MN, USA.
Riley EschDepartment of Biochemistry, Molecular Biology, and Biophysics, University of Minnesota, Minneapolis, MN, USA.
Megan KocherUniversity of Minnesota Libraries, Minneapolis, MN, USA.
Katie WilsonUniversity of Minnesota Libraries, Minneapolis, MN, USA.
Whiwon LeeDepartment of Genetics, Cell Biology, and Development, University of Minnesota, Minneapolis, MN, USA.
Heather A ZierhutDepartment of Genetics, Cell Biology, and Development, University of Minnesota, Minneapolis, MN, USA.ORCID 0000-0003-1941-664X

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

backgroundRacial/ethnic minority populations in the United States are consistently underrepresented in genetic research. Large-scale public participation is required to ensure discoveries from precision medicine research are applicable to everyone. To evaluate views toward and facilitators of participation among minority populations in the United States, we conducted a systematic review of literature.

methodsSix databases were searched for articles published from 2005 to 2018 assessing minority populations' views and/or willingness to participate in genetic research. A thematic framework was applied to extracted data to synthesize findings, and the Socio-Ecological Model was used to evaluate papers.

resultsReview of 2,229 titles and abstracts identified 27 papers (n = 8 qualitative, n = 19 quantitative). Themes included knowledge of genetics, engagement in research, facilitators and barriers to participation, and cultural considerations. Understanding of genetics was low, yet the majority of participants were willing to participate in genetic research among all populations included in the literature (range: 57%-97%). Recommendations for research included utilizing community-based participatory approaches, evaluating participants' informational needs, incentivizing participation, and providing direct benefits (e.g., genetic test results).

conclusionResults could influence future study designs that incorporate all levels of the Socio-Ecological Model and better meet the needs of underrepresented groups, thereby ensuring precision medicine research findings are applicable to all.

Indexed as

Genetic TestingEthnicityHealth Knowledge, Attitudes, PracticeHumansMinority GroupsPatient ParticipationPrecision MedicineRacial GroupsUnited Statesgenetic researchprecision medicine researchracial/ethnic minoritiesresearch participation strategies

Identifiers

PMID31867882
PMCPMC7005620

What Socratic holds

Textmetadata
LicenceCC BY-NC-ND
Read underepoch 390

Registered trials

None linked

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 Socratic graph.