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" Of Research Participants and Population Biobanks: "
Zawati, Ma'n Hilmi Mohammad
Khoury, Lara
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Latin Dissertation
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| Language of Document
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English
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| Record Number
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1109322
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| Doc. No
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TLpq2471772921
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| Main Entry
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Khoury, Lara
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Zawati, Ma'n Hilmi Mohammad
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| Title & Author
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Of Research Participants and Population Biobanks:\ Zawati, Ma'n Hilmi MohammadKhoury, Lara
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| College
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McGill University (Canada)
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| Date
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2019
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| student score
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2019
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| Degree
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D.C.L.
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| Page No
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312
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| Abstract
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The principle of autonomy has been the cornerstone of the physician's duty to inform since paternalistic medical practices receded in the second half of the 20th century. One prevalent conception of autonomy claims that the extent of the duty to inform (and, by extension, the duty to disclose) is inversely proportional to an intervention's expected therapeutic benefit. Indeed, Canadian Courts have found that research participants are not in a therapeutic relationship. As a consequence, they do not stand to benefit as patients in a clinical setting would. This distinction, according to judicial interpretation, demands a more exacting standard of information disclosure, one in which researchers are required to provide participants a full and frank disclosure of all facts, opinions and probabilities, no matter how remote, as well as any other material information about the research. As research becomes increasingly longitudinal (analyzed and accessed over time), international (crossing boundaries and legal jurisdictions), and less directly focused on individuals, the feasibility of applying this standard is being called into question. Additionally, research has come to rely less on direct interventions and ever more on bioinformatics technologies that generate massive amounts of data. This is especially true in the case of population biobanks, which aim to study data and samples collected over an extended period and on the scale of entire populations. This thesis will demonstrate that the dominant jurisprudential interpretation of the standard of disclosure applicable in the research context has a conception of individualistic autonomy at its core. It will then outline the multiple limitations individualistic autonomy faces in the context of population biobanks. This is so for two reasons: first, it fails to recognize the complexities of benefit considerations in the research setting. Second, given its unidirectional aims (any interaction centres around the participant), individualistic autonomy fails to acknowledge the multilateral relationships necessarily implicated in population biobanking research, including those that implicate the broader research community and the general public. In carrying out this analysis, this thesis will pay special attention to alternative approaches and focus specifically on relational autonomy. It will demonstrate that for relational autonomy to be applied in the population biobanking context, it will need to be situated in a conceptual framework that practically describes, acknowledges and sustains the multilateral relationships found in this species of research, without also compromising the rights of participants. Using theoretical discussions, this thesis will argue that, despite certain limitations, the concept of reciprocity as a basis for relational autonomy will succeed to do just that. It will, moreover, form the basis of a reconceived duty to inform for researchers and a new standard of disclosure that is more meaningful to research participants.
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Law
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