Abstract

One of the early, non-financial uses of blockchain technologies around which several startups have developed was to help manage, monetize, and make the sharing of genomic data more private. Because deidentified genomic data are excluded from HIPAA and many other regulatory contexts worldwide—and is already a widely traded commodity for science valued in the hundreds of millions over the past decade—genomic blockchains proved a promising entry point for using the benefits of blockchains for dissemination and remuneration of data. Several models have been tried, and most have touted their abilities to make users the “owners” of the genomic data in ways in which current models fail. This paper will explore the various existing and potential models for genomic blockchains, review some shortcomings and unmet needs, and explain why no technical solution alone will fulfill the promise of genomic data ownership without regulation.