Regulatory impact of Clinical use of Whole-Exome Sequencing: A France-Quebec comparison

Next-generation genomic sequencing (NGS) technologies developed in research are becoming cheap and efficient enough to be used to inform patient care. Yet, the transition of NGS technologies in the clinic is not without hurdles. Indeed, the data produced by NGS machines is large (which poses storage issues) extremely diverse and complex (interpretation issues) shared by the patients and their families (confidentiality issues) and can inform past, present and future health status (access and privacy issues). How are clinical research teams overcoming these hurdles today? Are the current legal and ethical regulations adapted to the clinical use of NGS? We will answer these questions by i) interviewing key stakeholders who are using NGS, and ii) analyzing the currently applicable regulations. The expected outcome of this project is to produce empirical data and knowledge to help policy decision makers foster an efficient and responsible use of NGS technologies in Québec clinics.

Faculty Supervisor:

Yann Joly

Student:

Partner:

Université Paul Sabatier

Discipline:

Sociology

Sector:

University:

McGill University

Program:

Globalink Research Award