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

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

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.

Publication types

  • Research Support, N.I.H., Extramural
  • Research Support, Non-U.S. Gov't

MeSH terms

  • Databases, Genetic
  • Genetic Association Studies*
  • Genetic Diseases, Inborn*
  • Genomics
  • Humans
  • Information Dissemination*
  • Patient Selection
  • Physicians
  • Rare Diseases / genetics*
  • Research Personnel
  • Translational Medical Research