Overcoming challenges associated with broad sharing of human genomic data.

Nat Genet

Department of Medical Ethics and Health Policy, Perelman School of Medicine, University of Pennsylvania, Philadelphia, PA, USA.

Published: January 2025

Since the Human Genome Project, the consensus position in genomics has been that data should be shared widely to achieve the greatest societal benefit. This position relies on imprecise definitions of the concept of 'broad data sharing'. Accordingly, the implementation of data sharing varies among landmark genomic studies. In this Perspective, we identify definitions of broad that have been used interchangeably, despite their distinct implications. We further offer a framework with clarified concepts for genomic data sharing and probe six examples in genomics that produced public data. Finally, we articulate three challenges. First, we explore the need to reinterpret the limits of general research use data. Second, we consider the governance of public data deposition from extant samples. Third, we ask whether, in light of changing concepts of broad, participants should be encouraged to share their status as participants publicly or not. Each of these challenges is followed with recommendations.

Download full-text PDF

Source
http://dx.doi.org/10.1038/s41588-024-02049-2DOI Listing

Publication Analysis

Top Keywords

data
8
genomic data
8
data sharing
8
public data
8
overcoming challenges
4
challenges associated
4
associated broad
4
broad sharing
4
sharing human
4
human genomic
4

Similar Publications

Want AI Summaries of new PubMed Abstracts delivered to your In-box?

Enter search terms and have AI summaries delivered each week - change queries or unsubscribe any time!