Below you will find scientific publications authored by our members or those enabled by our platform services.
2017
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
“Matching” consent to purpose: The example of the Matchmaker Exchange Journal Article
In: Human Mutation, vol. 38, no. 10, pp. 1281–1285, 2017, ISSN: 1098-1004, (_eprint: https://onlinelibrary.wiley.com/doi/pdf/10.1002/humu.23278).
Abstract | Links | BibTeX | Tags: consent, data access, data sharing, personalized medicine, precision medicine, privacy
@article{dyke_matching_2017,
title = {“Matching” consent to purpose: The example of the Matchmaker Exchange},
author = {Stephanie O M Dyke and Bartha M Knoppers and Ada Hamosh and Helen V Firth and Matthew Hurles and Michael Brudno and Kym M Boycott and Anthony A Philippakis and Heidi L Rehm},
url = {https://onlinelibrary.wiley.com/doi/abs/10.1002/humu.23278},
doi = {https://doi.org/10.1002/humu.23278},
issn = {1098-1004},
year = {2017},
date = {2017-01-01},
urldate = {2021-05-18},
journal = {Human Mutation},
volume = {38},
number = {10},
pages = {1281--1285},
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.},
note = {_eprint: https://onlinelibrary.wiley.com/doi/pdf/10.1002/humu.23278},
keywords = {consent, data access, data sharing, personalized medicine, precision medicine, privacy},
pubstate = {published},
tppubtype = {article}
}
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.