Abstract
This paper reports on end users' perspectives on the use of a blockchain solution for private and secure individual “omics” health data management and sharing. This solution is one output of a multidisciplinary project investigating the social, data, and technical issues surrounding application of blockchain technology in the context of personalized healthcare research. The project studies potential ethical, legal, social, and cognitive constraints of self-sovereign healthcare data management and sharing, and whether such constraints can be addressed through careful design of a blockchain solution.
Highlights
There is a news story almost every day about how individuals’ personal data are being harvested, shared with, and used by third parties without their consent and in ways that have real potential to cause harm
Some argue that blockchain technology can be used to provide individuals with greater control over their own data [i.e., “self-sovereignty” (Allen, 2016)] as a means to prevent the kind of “databuses” (Wittes, 2011) that have caused individuals to become concerned about their privacy and reduced their trust in sharing health data
Participants expressed willingness to consent to having university researchers use their data or to share data with government agencies in the event of a public health crisis but were reluctant to share with pharmaceutical companies or insurers for fear of being discriminated against
Summary
There is a news story almost every day about how individuals’ personal data are being harvested, shared with, and used by third parties without their consent and in ways that have real potential to cause harm. Privacy for participants in research and in clinical applications is a major concern because “[b]y nature, the genome encodes a sensitive yet heritable signature of an individual that is marked by genetic variation reflecting one’s ancestry and disclosing one’s susceptibility to health and diseases” Given the very grave potential consequences of unauthorized disclosure of omic data, protecting the privacy of individuals is of paramount importance
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