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  1. Organoid Biobanking, Autonomy and the Limits of Consent.Jonathan Lewis & Søren Holm - 2022 - Bioethics:1-15.
    In the debates regarding the ethics of human organoid biobanking, the locus of donor autonomy has been identified in processes of consent. The problem is that, by focusing on consent, biobanking processes preclude adequate engagement with donor autonomy because they are unable to adequately recognise or respond to factors that determine authentic choice. This is particularly problematic in biobanking contexts associated with organoid research or the clinical application of organoids because, given the probability of unforeseen and varying purposes for which (...)
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  • Mining the Data: Exploring Rural Patients’ Attitudes About the Use of Their Personal Information in Research.Jennifer B. McCormick, Margaret Hopkins, Erik B. Lehman & Michael J. Green - 2022 - AJOB Empirical Bioethics 13 (2):89-106.
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  • Implementing Regulatory Broad Consent Under the Revised Common Rule: Clarifying Key Points and the Need for Evidence.Holly Fernandez Lynch, Leslie E. Wolf & Mark Barnes - 2019 - Journal of Law, Medicine and Ethics 47 (2):213-231.
    The revised Common Rule includes a new option for the conduct of secondary research with identifiable data and biospecimens: regulatory broad consent. Motivated by concerns regarding autonomy and trust in the research enterprise, regulators had initially proposed broad consent in a manner that would have rendered it the exclusive approach to secondary research with all biospecimens, regardless of identifiability. Based on public comments from both researchers and patients concerned that this approach would hinder important medical advances, however, regulators decided to (...)
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  • From “Informed” to “Engaged” Consent: Risks and Obligations in Consent for Participation in a Health Data Repository.Elizabeth Bromley, Alexandra Mendoza-Graf, Sandra Berry, Camille Nebeker & Dmitry Khodyakov - 2020 - Journal of Law, Medicine and Ethics 48 (1):172-182.
    The development and use of large and dynamic health data repositories designed to support research pose challenges to traditional informed consent models. We used semi-structured interviewing to elicit diverse research stakeholders' views of a model of consent appropriate to participation in initiatives that entail collection, long-term storage, and undetermined future research use of multiple types of health data. We demonstrate that, when considering health data repositories, research stakeholders replace a concept of consent as informed with one in which consent is (...)
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  • The Past, Present, and Future of Informed Consent in Research and Translational Medicine.Susan M. Wolf, Ellen Wright Clayton & Frances Lawrenz - 2018 - Journal of Law, Medicine and Ethics 46 (1):7-11.
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