Evidence map›Paper›PMID 37212252›Full record

ArticleGenetics in medicine : official journal of the American College of Medical Genetics2023

Information-seeking preferences in diverse patients receiving a genetic testing result in the Clinical Sequencing Evidence-Generating Research (CSER) study.

Anne Slavotinek, Hannah Prasad, Simon Outram, Sarah Scollon, Shannon Rego, Tiffany Yip, Hannah Hoban, Kate M Foreman, Whitley Kelley, Candice Finnila and 5 more

Open access · greenAbstract read
PubMed Full text at PMC Publisher
In one paragraph

Article in Genetics in medicine : official journal of the American College of Medical Genetics, 2023. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.

0numbers the graph read from it
0cells of the map it votes in
0citing papers in PubMed
–field-weighted citation impact, top 86% of its field
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

0 citing papers in PubMed, 0 citations in OpenAlex.

No citing paper in PubMed yet.

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

15 authors at 7 institutions in 1 country.

Anne SlavotinekDivision of Medical Genetics, Department of Pediatrics, University of California, San Francisco, San Francisco, CA; Institute for Human Genetics, University of California, San Francisco, San Francisco, CA. Electronic address: anne.slavotinek@cchmc.org.
Hannah PrasadInstitute for Human Genetics, University of California, San Francisco, San Francisco, CA.
Simon OutramInstitute for Health & Aging, School of Nursing, University of California San Francisco, San Francisco, CA.
Sarah ScollonDepartment of Pediatrics, Baylor College of Medicine, Houston, TX.
Shannon RegoDivision of Medical Genetics, Department of Pediatrics, University of California, San Francisco, San Francisco, CA; Institute for Human Genetics, University of California, San Francisco, San Francisco, CA.
Tiffany YipDivision of Medical Genetics, Department of Pediatrics, University of California, San Francisco, San Francisco, CA; Institute for Human Genetics, University of California, San Francisco, San Francisco, CA.
Hannah HobanDivision of Medical Genetics, Department of Pediatrics, University of California, San Francisco, San Francisco, CA; Institute for Human Genetics, University of California, San Francisco, San Francisco, CA.
Kate M ForemanDepartment of Genetics, University of North Carolina at Chapel Hill, Chapel Hill, NC.
Whitley KelleyHudsonAlpha Institute for Biotechnology, Huntsville, AL.
Candice FinnilaHudsonAlpha Institute for Biotechnology, Huntsville, AL.
Jonathan BergDepartment of Genetics, University of North Carolina at Chapel Hill, Chapel Hill, NC.
Priyanka MuraliDepartment of Medicine (Medical Genetics), University of Washington Medical Center, Seattle, WA.
Katherine E BoniniInstitute for Genomic Health, Icahn School of Medicine at Mount Sinai, New York, NY.
Lisa J MartinDivision of Human Genetics Cincinnati Children's Hospital Medical Center, University of Cincinnati College of Medicine, Cincinnati, OH.
Adam HottHudsonAlpha Institute for Biotechnology, Huntsville, AL.
University of California, San Francisco · USHudsonAlpha Institute for Biotechnology · USUniversity of North Carolina at Chapel Hill · USBaylor College of Medicine · USCincinnati Children's Hospital Medical Center · USGenomic Health (United States) · USUniversity of Washington Medical Center · US

Funding

Sharing Aggregate Genomics Research Findings with Diverse Participants: A Pilot Study of an Innovative Design StrategyU01HG009599 · NHGRI · UNIVERSITY OF CALIFORNIA, SAN FRANCISCO · PI KOENIG, BARBARA A., KWOK, PUI-YAN · 2017 to 2021
$16.3M
NHGRI NIH HHS U01 HG009599
6 · The paper itself

Abstract

purposeAccurate and understandable information after genetic testing is critical for patients, family members, and professionals alike.

methodsAs part of a cross-site study from the Clinical Sequencing Evidence-Generating Research consortium, we investigated the information-seeking practices among patients and family members at 5 to 7 months after genetic testing results disclosure, assessing the perceived utility of a variety of information sources, such as family and friends, health care providers, support groups, and the internet.

resultsWe found that individuals placed a high value on information obtained from genetics professionals and health care workers, independent of genetic testing result case classifications as positive, inconclusive, or negative. The internet was also highly utilized and ranked. Study participants rated some information sources as more useful for positive results compared with inconclusive or negative outcomes, emphasizing that it may be difficult to identify helpful information for individuals receiving an uncertain or negative result. There were few data from non-English speakers, highlighting the need to develop strategies to reach this population.

conclusionOur study emphasizes the need for clinicians to provide accurate and comprehensible information to individuals from diverse populations after genetic testing.

Indexed as

Genetic TestingInformation Seeking BehaviorFamilyHumansPopulation GroupsUncertaintyDiverse populationsExome sequencingGenetic testingGenome sequencingInformation-seeking preferences

Identifiers

PMID37212252
PMCPMC10524447
OpenAlexW4377101246

What OpenQuestion holds

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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 OpenQuestion graph.