Data Sharing, Biobanks and Informed Consent: A Research Paradox
- McGill Journal of Law and Health
Author/s: -Allen, Clarissa; Joly, Yann; Moreno, Palmira Granados
Journal: McGill Journal of Law and Health
Start Page: 85
Population biobanks are research facilities that store human biological material and health data of thousands of participants to facilitate research in the field of personalized medicine. To achieve this goal. biobanks usually collect samples and data from re- search participants through the process of broad consent. This type of research consent request per- mission to use data and biological samples collected from a wide range of research projects that are not specifically identified in the consent form (e.g. for genetic research). This article aims to determine if the trend supported by research funding agencies, to require broad consent from biobank participants, meets current Canadian legal and ethical standards. Based on our research, it appears of paramount importance that the requirements of funding agencies could be better harmonized with the current legal and ethical framework. The lack of synchronization identified could have negative impacts on research and the realization of legal objectives. ldeally, rules governing consent in this area of research will have to evolve in order to better respond to the objectives and challenges of contemporary biomedical research. Meanwhile, funding agencies involved in bio- bank research should make a greater effort to reconcile their scientific requirements with current ethics and legal rules.