Biobanking in Global Health & Research

In Erick Valdés & Juan Alberto Lecaros (eds.), Handbook of Bioethical Decisions. Volume I: Decisions at the Bench. Springer Verlag. pp. 325-343 (2023)
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Abstract

Biobanking of patient-derived materials is routine in health care, research, and public health emergencies. Ethical guidelines for biobanking address concerns including some about genetic materials, informed consent, confidentiality, regulatory environments, and standards of governance. This chapter identifies some limitations of existing guidelines that were apparent to one author during an Ebola outbreak, and specifies five ethical concerns about biobanking that warrant additional attention: misconceptions about biobanking, unknown consequences for donors, socioeconomic inequities that compound vulnerabilities, lasting and proportional benefits in North-South research, and contextual challenges to disclosure and understanding. These affect patients, donors, health systems, research, and policy, and are amplified during public health emergencies.

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