Trust and Consequences: Biorepositories, Health Learning Systems, and Beyond
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Abstract: The functions and nature of trust have been widely explored within the context of biobanks. As an established body of literature demonstrates, trust is believed vital for conducting modern research in which thousands of human tissue specimens are linked with de-identified information from medical records in a "Big Data" approach to finding genomic patterns and correlations behind disease manifestations. Without trust, the literature holds, potential donors are liable to refuse donation out of fear of weak data security or of researcher misconduct. With transparency, security, oversight, and proper engagement practices, biobanks hope to secure donor trust. Trust is also important, albeit much less examined, in health care learning systems where a similar situation--researchers seeking to conduct research with subjects recruited within clinical spaces--prevails. Both biobanks and health learning systems are becoming increasingly popular means of finding answers to biomedical problems, and how trust functions in these settings cannot be overlooked. Purpose: This dissertation aims to 1) examine stakeholder preferences, including those particular to trust and patient consent and engagement preferences, during the establishment of the Northwest BioTrust, a biorepository resource local to Seattle, WA, 2) qualitatively analyze IRB and patient views on trust as they apply to the health care learning model, and 3) explore significant policy ramifications remaining to be explored within the literature on trust in biomedical spaces. The overarching purpose of the project is to better inform research practices, to promote research obligations in trust-building ways, and to strengthen our research ecosystem. Methods: My methods include: 1) semi-structured interviews with local biobanking experts and stakeholders, a focus group of King County citizens, and a systematic literature review spanning work published from 2000-2010 focusing on elements of trust and communication methods involving biobank donors and research participants, 2) qualitative content analysis of focus groups at leading Northwest clinics convened to discuss the ethics of research on medical practices, and 3) the linked advancement of a normative argument based on relational ethics. Results: Trust is critical, and in clinical spaces, potential participants prefer trust to be established relationally with one's care professionals, instead of with researchers or within research contexts; this characteristic adds important considerations to ongoing trust-building policy, particularly with regards to health learning systems. Conclusion: Trust is relational and not simply transactional. Though consent forms are the most common way of seeking to build trust and of encapsulating donor and researcher expectations and duties, they fail to capture several elements of trust-building that merit consideration. Researchers should examine their assumptions about the regulatory and ethical duties they must discharge in the light of relational ethics.