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

Title"Matching" consent to purpose: The example of the Matchmaker Exchange.
Publication TypeJournal Article
Year of Publication2017
AuthorsDyke, SOM, Knoppers, BM, Hamosh, A, Firth, HV, Hurles, M, Brudno, M, Boycott, KM, Philippakis, AA, Rehm, HL
JournalHum Mutat
Date Published2017 10
KeywordsDatabases, Genetic, Genetic Association Studies, Genetic Diseases, Inborn, Genomics, Humans, Information Dissemination, Patient Selection, Physicians, Rare Diseases, Research Personnel, Translational Medical Research

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.

Alternate JournalHum. Mutat.
PubMed ID28699299
PubMed Central IDPMC5669800
Grant ListUM1 HG008900 / HG / NHGRI NIH HHS / United States
U54 HG006542 / HG / NHGRI NIH HHS / United States
U41 HG006834 / HG / NHGRI NIH HHS / United States
/ / Wellcome Trust / United Kingdom
U41 HG006627 / HG / NHGRI NIH HHS / United States
/ / CIHR / Canada