Literature DB >> 34061257

Can Blockchain Solve the Dilemma in the Ethics of Genomic Biobanks?

Valérie Racine1.   

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.

Keywords:  Autonomy; Biobanks; Blockchain; Genome collections; Informational privacy

Year:  2021        PMID: 34061257     DOI: 10.1007/s11948-021-00311-y

Source DB:  PubMed          Journal:  Sci Eng Ethics        ISSN: 1353-3452            Impact factor:   3.525


  1 in total

Review 1.  A scoping review of distributed ledger technology in genomics: thematic analysis and directions for future research.

Authors:  Mikael Beyene; Philipp A Toussaint; Scott Thiebes; Matthias Schlesner; Benedikt Brors; Ali Sunyaev
Journal:  J Am Med Inform Assoc       Date:  2022-07-12       Impact factor: 7.942

  1 in total

北京卡尤迪生物科技股份有限公司 © 2022-2023.