Published: February 17, 2021 by Dr. Darra Hofman

“Omics” sciences, including genomics, proteomics, exposomics, phenomics, microbomics, and metabolomics[1], could provide revolutionary insight into human health, unlocking the knowledge hidden in the molecules of our bodies. Indeed, it has been argued that “the new era of omics studies…may lead to a true clinical application of personalized medicine”[2], with each of us receiving recommendations and treatments tailor-made for our unique biology. This research, however, is not without risks. Privacy, in particular, looms large for participants in omics research. Our omics, in a very real sense, are us. They can reveal our health and our heritage, our exposures and our cousins’ risks. Yet locking our omic data away also locks away the potential to save lives and reduce suffering. In “Having Our “Omic” Cake and Eating It Too?: Evaluating User Response to Using Blockchain Technology for Private and Secure Health Data Management and Sharing,”[3] our team explored a potential solution to this dilemma: self-sovereign blockchain-based healthcare data management and sharing. Self-sovereign identity (SSI) has the goal of giving the user autonomy, giving them secure control over a portable identity in different digital systems, without any other party having the custody or control over that person’s identity.  Blockchain, a decentralized, highly-tamper resistant database technology, is often used as a trust anchor for SSI systems. SSI data management radically shifts the locus of control over data and records, centering the user. However, this control requires the user to confront complex risk-benefit decisions about the use of their data while navigating novel technology. Our study asked if potential users saw themselves navigating the complexity, and what challenges they foresaw.

After designing a prototype of our blockchain-based SSI system for omic data, we ran three focus groups. We gave our focus group participants a presentation about consent, management, privacy of personal health data and blockchain technology. After the presentation, we showed the participants wireframes of the user interface of the prototype. We then asked a set of semistructured questions, asking the participants about their understanding of blockchain technology, their views of data privacy and sharing, and their thoughts about the user interface for the prototype. Our study showed that there remain a number of open challenges to the adoption of blockchain solutions for secure, private health data sharing. Participants identified a number of current challenges in health data sharing (sharing between providers/across jurisdictions; breaches). Some were reluctant to use a blockchain-based solution due to its novelty; others expressed lack of trust in the underlying cryptographic protocols. Other concerns that arose include the need to know precisely who is gaining access to one’s data (with participants more willing to share with academic researchers than pharmaceutical companies, example) and the accessibility of the solution to older or less technically-savvy people. Despite the challenges, there were participants willing to engage with a blockchain platform before it was fully mater, as “Someone has to start, right?” While our study shows that there remains significant work to be done before blockchain solutions can help us have our “omic cake” and eat it too (in privacy!), it also shows that “someone has to start.” There’s too much to gain – and to lose – to not.