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

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Date: Nov. 15, 2022
From: CMAJ: Canadian Medical Association Journal(Vol. 194, Issue 44)
Publisher: CMA Impact Inc.
Document Type: Viewpoint essay
Length: 1,414 words
Lexile Measure: 1640L

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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. (1) 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.

Various alternatives to specific consent have been proposed as a solution to this problem. For example, blanket consent allows health data to be used without any restrictions; broad consent allows health data to be used based on some knowledge about how decisions about the use of data will be made (e.g., a particular kind of governance arrangement), but without giving people specific details about how their data will be used. (2) Dynamic consent involves continually updating participant consent with 2-way, ongoing communication between researchers and participants, and meta-consent enables people to express preferences regarding which type of consent they want to give for which type of research. (3)

Nevertheless, even when participants do give their valid consent to share their genomic data, it will inevitably be on the basis of a degree of uncertainty, as indicated by the authors of the related guidance for policy in their stipulation that participant consent forms should include an explanation that "future...

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Gale Document Number: GALE|A726460706