Title

Citizen Science: The Law and Ethics of Public Access to Medical Big Data

Authors

Sharona Hoffman

Abstract

Patient-related medical information is becoming increasingly available on the Internet, spurred by government open data policies and private sector data sharing initiatives. Websites such as HealthData.gov, GenBank, and PatientsLikeMe allow members of the public to access a wealth of health information. As the medical information terrain quickly changes, the legal system must not lag behind. This Article provides a base on which to build a coherent data policy. It canvasses emergent data troves and wrestles with their legal and ethical ramifications.

Publicly accessible medical data have the potential to yield numerous benefits, including scientific discoveries, cost savings, the development of patient support tools, healthcare quality improvement, greater government transparency, public education, and positive changes in healthcare policy. At the same time, the availability of electronic personal health information that can be mined by any Internet user raises concerns related to privacy, discrimination, erroneous research findings, and litigation. This Article analyzes the benefits and risks of health data sharing and proposes balanced legislative, regulatory, and policy modifications to guide data disclosure and use.

Keywords

Citizen science, big data, data sharing, medical privacy, HIPAA Privacy Rule, medical research, data de-identification, disability discrimination, data stewardship, data use agreements, data mining

Publication Date

2014

Document Type

Article

Place of Original Publication

Berkeley Technology Law Journal

Publication Information

Berkeley Technology Law Journal (forthcoming)

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