There Will Be Sharing: Population Biobanks, the Duty to Inform and the Limitations of the Individualistic Conception of Autonomy
(2014) 21 Health Law Review, 97
Posted: 18 Jul 2015 Last revised: 14 Dec 2018
Date Written: June 1, 2014
The increasingly longitudinal and international nature of research is challenging the feasibility of maintaining such an expansive duty to inform. As researchers rely less on active human participation, and more on cutting-edge technologies that generate vast amounts of data, the parameters of the traditional duty to inform look increasingly porous. This is particularly true for population biobanks, which aim to study data and samples collected on a large population scale and over a long period of time. In these large-scale projects, participants are informed that their data and samples will be used to establish biobanks as resources for future research in health and genomics. This text will first discuss the role, main objectives and distinct characteristics of population biobanks (Part A). Secondly, it will provide an overview of international, regional and Canadian normative documents, both legislative and non-legislative, addressing the significance of sharing data and samples, which lie at the heart of why biobanks are using the broad consent approach (Part B). Third, the duty to inform in non-therapeutic research will be outlined through readings of Halushka v. University of Saskatchewan and Weiss v. Solomon. This analysis will outline the requirements of a heightened intensity of disclosure in research, and will be contrasted with the limited information population biobanks provide to participants on the sharing of their data and samples (Part C). Part C will also examine the cause behind this amplification of researchers’ duties, which I assert is an individualistic conception of autonomy, incompatible with the objectives of research (in general) and population biobanks (in particular).
Keywords: Population Biobanks, Individual Autonomy, Broad Consent, Law, Ethics, Return of Results
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