Sharing genomic data for health research: institutional trust and trustworthiness, and informed consent

Sharing genomic data for health research: institutional trust and trustworthiness, and informed consent
Mackenzie Graham
Canadian Medical Association Journal, 15 November 2022; 194(44)
Open Access
Excerpt
   Recent years have seen a dramatic increase in the collection, storage and curation of human genomic data for biomedical research. These data sets hold great promise for research into the genetic basis of disease, and represent more diverse populations than have traditionally been accessible in research. Large-scale federated data networks like the proposed Canadian Human Genome Library (CHGL) represent a potential way of providing secure access to these data to researchers beyond select institutions. However, the promise of human genomics research has been encumbered by ethical concerns about data sharing. One particular concern is whether it is possible to obtain informed consent to the population-level research that genomic databases like the CHGL are intended to facilitate.
Participants in genome-based research or patients who receive genome or exome sequencing as part of their clinical care may be asked to consent to allow their data — not only genomic data but associated clinical or administrative data stored by an institution — to be made available to future researchers. Because the future uses of these data are unknown at the time of data collection, concern has been raised about whether consent for this future data use is, or can be, informed…