Evidence map›Paper›PMID 34906477›Full record

ArticleGenetics in medicine : official journal of the American College of Medical Genetics2022

The difficulties of broad data sharing in genomic medicine: Empirical evidence from diverse participants in prenatal and pediatric clinical genomics research.

Matthew Norstad, Simon Outram, Julia E H Brown, Astrid N Zamora, Barbara A Koenig, Neil Risch, Mary E Norton, Anne Slavotinek, Sara L Ackerman

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, 2022. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 6 papers, 1 of them a synthesis that pooled it.

0numbers the graph read from it
0cells of the map it votes in
6citing papers in PubMed, 1 pooled it
1.2field-weighted citation impact, top 20% 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

6 citing papers in PubMed, 1 synthesis or guideline pooled it, 8 citations in OpenAlex.

  1. Pooled it
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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

9 authors at 3 institutions in 1 country.

Matthew NorstadProgram in Bioethics, University of California San Francisco, San Francisco, CA; Institute for Health & Aging, School of Nursing, University of California San Francisco, San Francisco, CA. Electronic address: matthew.norstad@ucsf.edu.
Simon OutramProgram in Bioethics, University of California San Francisco, San Francisco, CA; Institute for Health & Aging, School of Nursing, University of California San Francisco, San Francisco, CA.
Julia E H BrownProgram in Bioethics, University of California San Francisco, San Francisco, CA; Institute for Health & Aging, School of Nursing, University of California San Francisco, San Francisco, CA.
Astrid N ZamoraProgram in Bioethics, University of California San Francisco, San Francisco, CA; Department of Nutritional Sciences, School of Public Health, University of Michigan, Ann Arbor, MI.
Barbara A KoenigProgram in Bioethics, University of California San Francisco, San Francisco, CA; Institute for Health & Aging, School of Nursing, University of California San Francisco, San Francisco, CA; Philip R. Lee Institute for Health Policy Studies, University of California San Francisco, San Francisco, CA; Institute for Human Genetics, University of California San Francisco, San Francisco, CA; Department of Social & Behavioral Sciences, School of Nursing, University of California San Francisco, San Francisco, CA; Department of Humanities and Social Sciences, University of California San Francisco, San Francisco, CA.
Neil RischInstitute for Human Genetics, University of California San Francisco, San Francisco, CA; Department of Epidemiology & Biostatistics, University of California San Francisco, San Francisco, CA.
Mary E NortonInstitute for Human Genetics, University of California San Francisco, San Francisco, CA; Department of Obstetrics, Gynecology & Reproductive Sciences, University of California San Francisco, San Francisco, CA.
Anne SlavotinekInstitute for Human Genetics, University of California San Francisco, San Francisco, CA; Division of Medical Genetics, Department of Pediatrics, University of California San Francisco, San Francisco, CA.
Sara L AckermanProgram in Bioethics, University of California San Francisco, San Francisco, CA; Department of Social & Behavioral Sciences, School of Nursing, University of California San Francisco, San Francisco, CA.
University of California, San Francisco · USInstitute on Aging · USUniversity of Michigan–Ann Arbor · 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

purposeThis study aimed to understand broad data sharing decisions among predominantly underserved families participating in genomic research.

methodsDrawing on clinic observations, semistructured interviews, and survey data from prenatal and pediatric families enrolled in a genomic medicine study focused on historically underserved and underrepresented populations, this paper expands empirical evidence regarding genomic data sharing communication and decision-making.

resultsOne-third of parents declined to share family data, and pediatric participants were significantly more likely to decline than prenatal participants. The pediatric population was significantly more socioeconomically disadvantaged and more likely to require interpreters. Opt-in was tied to altruism and participants' perception that data sharing was inherent to research participation. Opt-out was associated with privacy concerns and influenced by clinical staff's presentation of data handling procedures. The ability of participants to make informed choices during enrollment about data sharing was weakened by suboptimal circumstances, which was revealed by poor understanding of data sharing in follow-up interviews as well as discrepancies between expressed participant desires and official recorded choices.

conclusionThese empirical data suggest that the context within which informed consent process is conducted in clinical genomics may be inadequate for respecting participants' values and preferences and does not support informed decision-making processes.

Indexed as

Genomic MedicineInformed ConsentChildGenomicsHumansInformation DisseminationPrivacyClinical genomicsData sharingInformed consentPrecision medicine

Identifiers

PMID34906477
PMCPMC12970631
OpenAlexW3217515989

What OpenQuestion holds

Textmetadata
LicenceTDM
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 OpenQuestion graph.