“Matching” consent to purpose: The example of the Matchmaker Exchange

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.

International Cooperation to Enable the Diagnosis of All Rare Genetic Diseases

“…Several critical areas of data-sharing governance are currently the focus of collaborative efforts. First, the collaboration developed a “tiered” consent policy that is dependent on the context of data collection and use (clinical or research) and on the level of risk that the shared data will be identified; this policy is currently in use by the Matchmaker Exchange 30 , 31 (MME; see below). Two related initiatives, namely the Consent Codes 32 model and the Automatable Discovery and Access Matrix (ADA-M), seek to enable systematized representation of consent-, legal-, and institutional-based permissions and restrictions associated with research and clinical records to facilitate streamlined and appropriate discovery, sharing, and use of extant datasets.…”

Enabling Global Clinical Collaborations on Identifiable Patient Data: The Minerva Initiative

“…Consequently, data sharing is unlikely to happen without specific consent for integration of personally identifiable information. Consequently, most data-sharing efforts bringing together global data rely heavily on de-identification or the minimization of sharing more sensitive data (Dyke et al, 2017).…”

Variant data sharing by clinical laboratories through public databases: consent, privacy and further contact for research policies

“…[…] Use of this level of information carries a possible risk of re-identification and as such requires appropriate patient consent." 20 Additionally, to mitigate privacy concerns, public variant databases may provide different levels of data access to general users and registered users, enabling the acceptance of terms and conditions related to an appropriate use of the data for more detailed patient information that presents a higher level of risk. 21 In sharing more data with such protections, it becomes possible to limit research and other potential uses according to the consent preferences of individuals using simple tools such as the Consent Codes, which let registered users know of consent-based restrictions on data use (e.g., use of the data is limited to health/medical/biomedical purposes).…”