Abstract
In discussions on 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 paper, I describe a private venture in blockchain genomics that seeks to provide an apt solution to concerns about potential privacy violations in genome collections and biobanks. I then provide some reasons to doubt the kind of solution to the dilemma that such start-ups propose. I argue that the sort of autonomy that grounds the value of the right to informational privacy cannot be secured with blockchain technology alone. So, blockchain genomics ventures are insufficient to establish the permissibility of genome collections and biobanks. I then discuss an additional ethical challenge to genomic biobanks. This challenge takes the form of doubting that future benefits that result from biomedical research dependent on genomic databases will outweigh the costs. Despite criticisms of genomic research, I claim that it is reasonable to think that future net benefits will be gained from research on such databases. Therefore, I conclude that there remains a dilemma in the ethics of genomic biobanks.
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Notes
In this paper, I will focus on Nebula Genomics simply because they explicitly address the challenge of protecting people’s privacy in the contexts of biobanks in their white paper and other published papers and commentaries (see Grishin et al. 2018a, Grishin et al. 2018b, Grishin et al. 2019a, Grishin et al. 2019b). There are, however, many other similar start-ups in blockchain genomics, such as LunaDNA and EncrypGen, which aim to leverage blockchain technology to store and manage biomedical data and to compensate individuals for contributing their genomic and genetic data to biomedical research.
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Racine, V. Can Blockchain Solve the Dilemma in the Ethics of Genomic Biobanks?. Sci Eng Ethics 27, 35 (2021). https://doi.org/10.1007/s11948-021-00311-y
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DOI: https://doi.org/10.1007/s11948-021-00311-y