Valerie Racine, PhD
Assistant Professor of Philosophy
Western New England University
Abstract: In discussions of the ethics of genome collections and biobanks, the main worry about whether we are permitted to collect and use individuals’ genomic and genetic data is the potential for the violation of individuals’ right to informational privacy. Yet, if we do not permit these endeavors, we risk giving up on the future benefits of biomedical research. In this talk, Dr. Racine describes a private venture in blockchain genomics that seeks to provide an apt solution to concerns about potential privacy violations in genome collections and biobanks. She also provides some reasons to doubt the kind of solution to the dilemma that such start-ups propose. She argues that the sort of autonomy that grounds the value of the right to informational privacy cannot be secured with blockchain technology alone. Further, she discusses whether future benefits that result from biomedical research dependent on genomic databases will outweigh the costs and claims that it is reasonable to think that future net benefits will be gained from research on such databases.
Co-sponsored by the Future Law Project at the University of Pittsburgh Law School, the Center for Governance and Markets, and the Center for Bioethics & Health Law