The Meaning and Significance of Informed Consent in Tissue/Blood Donation: An Exploration of Theoretical Foundations and Donor Perspectives Through a Collective Case Study of Canadian Public Cord Blood Banks

This thesis embarks on a conceptual critique of the Anglo-American conception of fully-informed consent in the context of tissue/blood donation, using a collective case study of two Canadian public cord blood banks as an illustrative example. It challenges the Anglo-American conception of "informed consent" as the primary justification for the use of human blood/tissues in research or therapy. It shows how meaningful consent from the perspective of cord blood donors is more consistent with theories that emphasize the key role of agency-based communication, trustworthiness of governing frameworks and the integrity of health professionals and researchers.;These critical perspectives are illustrated in a collective case study involving two Canadian public cord blood banks. In-depth semi-structured open-ended interviews with donors to these cord blood banks are used to exemplify how the meaning and significance of consent from the perspective of donors can diverge from the traditional Anglo-American ideal. Donors discuss their motivations to donate and express a willingness to provide broad consent to secondary uses of cord blood in research, given the assumption of the trustworthiness of institutional and regulatory governing mechanisms and frameworks, as well as the integrity of the professionals involved.;This thesis coincides with the development of a Canadian national cord blood Program. Drawing upon the experience of the United States, Australia and the United Kingdom in developing national cord blood programs, as well as the findings of the collective case study of Canadian public cord blood banks, this thesis provides recommendations pertaining to informed consent practices within the broader governing framework of a Canadian national cord blood program.;Critiques of autonomy are presented using perspectives from contemporary theories, including feminist and relational ethical theories and virtue ethics. The primary analytical framework used is that of Manson & O'Neill (2007); these authors deconstruct the concept of informed consent to elucidate the features crucial to policy as well as clinical and research practices. According to their framework, consent is a limited waiver granted on the basis of trust on part of donors in governing frameworks, where the governing frameworks, rather than the disclosure requirements, primarily justify the uses of human blood/tissues.