Population Biobanking, Autonomy and the Duty to Inform: Streamlining Access to Data while Protecting Participants

Le Groupe de recherche sur la santé et le droit vous convie à la deuxième conférence annuelle sur la santé et le droit, laquelle sera prononcée par Ma’n H. Zawati, doctorant et membre du groupe. Ma'n examinera comment les biobanques populationnelles peuvent simplifier l'accès aux données tout en protégeant les participants à la recherche. Un léger repas sera servi à 12h15. Les places sont limitées. Prière de confirmer sa présence en écrivant rghl.law [at] mcgill.ca.

Résumé

(En anglais seulement) In research, Canadian courts have maintained that participants are entitled to a "full and frank disclosure" and that researchers' duties in that regard are as great, if not greater, than the duties owed by physicians in the clinical setting. That being said, the increasingly longitudinal and international nature of research challenges the feasibility of maintaining such an expansive duty to inform. Take population biobanks as an example. These longitudinal studies are limited in terms of what information they can provide to research participants during the initial consent process. On the one hand, they are increasingly encouraged to provide access to their collections, but on the other hand, they are unable to provide participants with “full disclosure” on the future use of their data at the time of recruitment. By re-examining conceptions at the heart of the legal duty to inform, this presentation will discuss ways in which population biobanks can continue to streamline access to data while protecting research participants.

Le conférencier

(En anglais seulement) Ma’n H. Zawati (LL.B., LL.M.) is a lawyer and the Academic Coordinator of the Centre of Genomics and Policy at McGill University. He is currently completing his Doctoral degree in law (D.C.L.) at McGill University and is the Graduate Member of the McGill Research Group on Health and Law. Me Zawati is also an Associate Member of the University’s Biomedical Ethics Unit since 2013. His research focuses on the legal and ethical aspects of biobanking as well as the legal duties and liability of health care professionals in both the clinical and research settings. He has published numerous articles on issues such as access to genomic databases, the return of research results/incidental findings, the legal liability of physicians and the closure of biobanks. Me Zawati has also presented on these topics in Canada and internationally. Recently, the Young Bar Association of Montreal has named him as one of its “Lawyer of the Year” awardees for 2014.

Une demande de reconnaissance comme activité de formation continue(1,5 h) a été déposée auprès du Barreau du Québec.