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The 5th ELSI Congress - ELSIcon2022

ELSIcon2022 Paper: The ELSI of Pandemic Biobanking


ELSIcon2022 • Paper • May 27, 2022

Sara Watson, Karen Meagher

The objective of the Pandemic Research: Optimizing Technology and Ethics for Coronavirus Teams Implementing Novel Genetics (PROTECTING) Study was to explore expert and biospecimen contributor attitudes during the creation and utilization of a Coronavirus 2019 (COVID-19) biobank. We present the results of qualitative in-depth interviews with creators, utilizers, and contributors to the COVID-19 Biobank (n=22, enrollment ongoing). A combined convenience and snowball sampling strategy was used to identify participants. A phenomenological approach was used for analysis. Preliminary results indicate themes of role disruption, stigma and responsibility for pandemic actions, and interest in social benefits of research - including from genetic studies. Results also capture participants' views on different approaches to pandemic biospecimen research informed consent including consent waivers, prospective consent, and delayed retrospective consent. Discussion will situated these results in the context of how SARS-CoV-2 has presented new ELSI challenges to biobanking. We invite attendees to consider the global health development of the WHO Pandemic Influenza Pandemic Preparedness framework and its inclusion of reciprocity assurances, which did not apply to COVID-19 biospecimens. Attendees will leave the presentation with an overview of how ELSI researchers can anticipate and contribute to ongoing discourse and policymaking around pandemic biorepository practices.


Attitudes about sharing biological samples and health data

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