Journal Article

Toward better governance of human genomic data

Dove, Edward S., Eckstein, Lisa, Shabani, Mahsa, De Vries, Jantina, Nicol, Dianne, Prainsack, Barbara, McGuire, Amy L., Burgess, Michael M., Meslin, Eric M., Koenig, Barbara A., Bentzen, Heidi Beate, Borry, Pascal, McGrail, Kimberlyn M., Chalmers, Don, Kaye, Jane, O’Doherty, Kieran C., Fullerton, Stephanie M., Thorogood, Adrian, Juengst, Eric, Manson, Spero M., Terry, Sharon F., Kato, Kazuto, Knoppers, Bartha Maria, Burke, Wylie

2021

Overview

Here, we argue that, in line with the dramatic increase in the collection, storage and curation of human genomic data for biomedical research, genomic data repositories and consortia have adopted governance frameworks to both enable wide access and protect against possible harms. However, the merits and limitations of different governance frameworks in achieving these twin aims are a matter of ongoing debate in the scientific community; indeed, best practices and points for consideration are notably absent in devising governance frameworks for genomic databases. According to our collective experience in devising and assessing governance frameworks, we identify five key functions of ‘good governance’ (or ‘better governance’) and three areas in which trade-offs should be considered when specifying policies within those functions. We apply these functions as a benchmark to describe, as an example, the governance frameworks of six large-scale international genomic projects.

• Publisher: Nature Publishing Group US,Nature Publishing Group
• Subject: 631/208 / 631/208/212 / Agriculture / Animal Genetics and Genomics / Best practice / Biobanks / Biomedical and Life Sciences / Biomedical data / Biomedical research / Biomedicine / Cancer Research / Comment / Consent / Consortia / Data collection / Databases, Genetic / Electronic data processing / Gene Function / Genome, Human / Genomes / Genomics / Human Genetics / Human genome / Humans / Information management / International agreements / Internationality / Methods / Public good / Researchers