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Hum Mutat. 2017 Oct;38(10):1281-1285. doi: 10.1002/humu.23278. Epub 2017 Jul 12.

"Matching" consent to purpose: The example of the Matchmaker Exchange.

Author information

1
Centre of Genomics and Policy, Faculty of Medicine, McGill University, Montreal, Quebec, Canada.
2
McKusick-Nathans Institute of Genetic Medicine, Johns Hopkins University, Baltimore, Maryland.
3
Wellcome Trust Sanger Institute, Wellcome Genome Campus, Hinxton, Cambridge, UK.
4
Department of Computer Science, University of Toronto, Toronto, Ontario, Canada.
5
Centre for Computational Medicine, Hospital for Sick Children, Toronto, Ontario, Canada.
6
Children's Hospital of Eastern Ontario Research Institute, University of Ottawa, Ontario, Canada.
7
Broad Institute of MIT and Harvard, Cambridge, Massachusetts.
8
Department of Pathology, Brigham & Women's Hospital and Harvard Medical School, Boston, Massachusetts.

Abstract

The Matchmaker Exchange (MME) connects rare disease clinicians and researchers to facilitate the sharing of data from undiagnosed patients for the purpose of novel gene discovery. Such sharing raises the odds that two or more similar patients with candidate genes in common may be found, thereby allowing their condition to be more readily studied and understood. Consent considerations for data sharing in MME included both the ethical and legal differences between clinical and research settings and the level of privacy risk involved in sharing varying amounts of rare disease patient data to enable patient matches. In this commentary, we discuss these consent considerations and the resulting MME Consent Policy as they may be relevant to other international data sharing initiatives.

KEYWORDS:

consent; data access; data sharing; personalized medicine; precision medicine; privacy

PMID:
28699299
PMCID:
PMC5669800
DOI:
10.1002/humu.23278
[Indexed for MEDLINE]
Free PMC Article

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