“Extremely Slow and Capricious”: A Qualitative Exploration of Genetic Researcher Priorities in Selecting Shared Data Resources

Authors

M Grace Trinidad
Kerry A Ryan
Chris D Krenz
J Scott Roberts
Amy L McGuire
Raymond De Vries
Brian J Zikmund-Fisher
Sharon Kardia
Erica Marsh
Jane Forman
Madison Kent
David Wilborn
Kayte Spector-Bagdady

Language

English

Publication Date

1-1-2023

Journal

Genetics in Medicine Open

DOI

10.1016/j.gim.2022.09.003

PMID

36371759

PMCID

PMC9843821

PubMedCentral® Posted Date

1-1-2024

PubMedCentral® Full Text Version

Author MSS

Abstract

Purpose: Genetic researchers' selection of a database can have scientific, regulatory, and ethical implications. It is important to understand what is driving database selection such that database stewards can be responsive to user needs while balancing the interests of communities in equitably benefiting from advances.

Methods: We conducted 23 semistructured interviews with US academic genetic researchers working with private, government, and collaboratory data stewards to explore factors that they consider when selecting a genetic database.

Results: Interviewees used existing databases to avoid burdens of primary data collection, which was described as expensive and time-consuming. They highlighted ease of access as the most important selection factor, integrating concepts of familiarity and efficiency. Data features, such as size and available phenotype, were also important. Demographic diversity was not originally cited by any interviewee as a pivotal factor; when probed, most stated that the option to consider diversity in database selection was limited. Database features, including integrity, harmonization, and storage were also described as key components of efficient use.

Conclusion: There is a growing market and competition between genetic data stewards. Data need to be accessible, harmonized, and administratively supported for their existence to be translated into use and, in turn, result in scientific advancements across diverse communities.

Keywords

Humans, Research Personnel, Information Dissemination, Data set, Diversity, ELSI, Ethics, Policy

Published Open-Access

yes

Recommended Citation

Trinidad, M Grace; Ryan, Kerry A; Krenz, Chris D; et al., "“Extremely Slow and Capricious”: A Qualitative Exploration of Genetic Researcher Priorities in Selecting Shared Data Resources" (2023). Center for Medical Ethics and Health Policy Staff Publications. 282.
https://digitalcommons.library.tmc.edu/med_ethics/282