With all good wishes for the future of science: operationalizing the shift from research subjects to participants


Date
Location
501 Wartik
Event
Seminar

Abstract

In 2024, the World Medical Association updated the Declaration of Helsinki on the occasion of its 60th anniversary. One key shift was that of the language around people in research - instead of being referred to as subjects, they would be known as participants. While this shift may seem editorial, it represents an evolution in our thinking about the research ecosystem. Genomics, specifically data sharing in genomics, provides an interesting, higher stakes test case for this evolving conceptualization of research participation. In this talk that combines bioinformatics and bioethics, I will discuss the foundations and futures of genomic data sharing and consent to participant in research in the pangenomic era.

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