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The 5th ELSI Congress - ELSIcon2022

ELSIcon2022 Paper: Neglected ELSI in Biobanking: Addressing Issues of Governance, Stewardship, and Equity


ELSIcon2022 • Paper • June 3, 2022

Roselle Ponsaran, Kyle B. Brothers, Aaron Goldenberg, Jean Cadigan

The promotion of precision medicine has led to increased interest in larger collections of biospecimens that are more representative of genetic variation across and within diverse populations. These repositories may collect biospecimens from multiple sources (healthcare systems, advocacy groups, private companies, etc.), and link them with data from multiple sources (electronic health records, environmental data, wearable device data, etc.). The ELSI community has developed a robust literature identifying and addressing the ethical, legal, and social implications of biobanking. Nevertheless, the continued evolution of biobanking has revealed a number of unanswered and understudied ELSI questions regarding the collection, storage, and use of biospecimens and data. This presentation will address these “neglected” ELSI issues in biobanking, utilizing data from a recent multi-institutional and transdisciplinary study of biobank networks. Specifically, we will address (1) the governance challenges of networked biorepositories who aim to leverage samples across multiple collection sites, harmonize consent and research practices, and address local donor needs; (2) the distinctive needs for relationship-building between donor communities and researchers to create and sustain biobank networks, especially with underserved or underrepresented populations; (3) the critical need to establish policies and practices that address equity in all aspects of biobanking including inclusion and recruitment, access to samples and research prioritization, return of results, and approaches to benefit sharing; and (4) the creation of stewardship models that honor a donor’s desire to see their samples and data used for health research at a time when many biobanks struggle with underutilization by researchers.


equity and justice in genetics
Data and data stewardship

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