Center for Medical Ethics and Health Policy Staff Publications

Publication Date

1-1-2026

Journal

AJOB Empirical Bioethics

DOI

10.1080/23294515.2026.2632088

PMID

41790447

PMCID

PMC13082761

PubMedCentral® Posted Date

4-16-2026

PubMedCentral® Full Text Version

Author MSS

Abstract

Background: Despite major shifts in U.S. federal government data sharing requirements, their impact, and relation to researcher choice of database, are underexplored. This study surveyed genetic researchers regarding trends, priorities, perceptions of quality, impact on research outcomes, and genomic data sharing and use across government, consortium, and private databases.

Methods: As part of an exploratory sequential mixed methods project, we surveyed 294 U.S.-based genomic academic researchers.

Results: Genetic researchers generally have a choice between databases, which allows them to prioritize data quality. This might explain recent trends toward the use of government and consortium databases away from private ones. Respondents reported several significant differences in the requirements that different data stewards place on them, which impact their work. Private data stewards generally had the most restrictions and were the least likely to allow users to release the full dataset at completion, despite over 50% of respondents reporting the use of federal funds for such research. Our findings indicate that upstream benefits (i.e., access, database features) are more impactful on researchers' choice in databases than downstream publication limitations (e.g., co-authorship, limited data release). Respondents also reported the time necessary to share data as the biggest barrier to contributing to government databases and non-comprehensiveness as the biggest challenge to using existing government data.

Conclusions: The federal government can leverage these findings about researcher priorities to continue attracting researchers, to push forward goals related to open science and enabling advances for patients underrepresented in genetic research, and to found new genomic data sharing policy moving forward.

Keywords

United States, Humans, Information Dissemination, Research Personnel, Genomics, Genetic Research, Databases, Genetic, Academia, Federal Government, Surveys and Questionnaires, data sharing, genetics, policy analysis, survey

Published Open-Access

yes

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