Médecine personnalisée, biobanques et recherche translationelle : élaboration d'un cadre de gouvernance pour le bénéfice des Québécois

 

Yann Joly

Université McGill

 

Domaine : génétique humaine

Programme chercheurs-boursiers - Junior 2

Concours 2015-2016

Personalised medicine (PM) is a therapeutic approach considered as one of the most promising applications of human genetics research. It consists of adapting health care to the specific profile of each patient. Public and private investments in this domain in Québec are substantial, and so are the public's expectations. With the aim of facilitating scientific research in PM, a new type of biobank was recently developed, focused on specific diseases categories. These biobanks enable physician-researchers to monitor participants-patients in a real-time fashion, and to inform them of any scientific discovery, or clinical research opportunity potentially applicable to their specific profile. Quebec researchers in law and ethics have not yet taken significant interest in these biobanks, even though they raise a number of important questions, regarding notably the collection and storage of, access to, and protection of personal data.

My research program will aim at defining legal and ethical policies needed for the establishment of efficient and secure biobanks, centered on participants-patients in PM in Quebec. It will result in the drafting/development/publication of a report gathering concrete solutions, which will be presented to Quebec policymakers and research community. From the start, investigators/scientific researchers/researchers, research participants, policymakers and pharmaceutical companies will be involved in my research program's activities, and will hence highly/directly benefit from its results. We will work in close collaboration with Quebec, Canadian and international experts in this domain. Resolving ethical and legal stakes of PM is a necessary step for it to provide the therapeutic benefits anticipated/expected/, and which will allow Quebec to distinguish itself in this domain at the national and international levels.