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“Matching” consent to purpose: The example of the Matchmaker Exchange
Author(s) -
Dyke Stephanie O. M.,
Knoppers Bartha M.,
Hamosh Ada,
Firth Helen V.,
Hurles Matthew,
Brudno Michael,
Boycott Kym M.,
Philippakis Anthony A.,
Rehm Heidi L.
Publication year - 2017
Publication title -
human mutation
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 1.981
H-Index - 162
eISSN - 1098-1004
pISSN - 1059-7794
DOI - 10.1002/humu.23278
Subject(s) - data sharing , odds , matching (statistics) , data exchange , informed consent , disease , patient data , biology , patient privacy , internet privacy , computer science , medicine , alternative medicine , health care , world wide web , pathology , law , political science , logistic regression , machine learning
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.