Citizen Science: The Law and Ethics of Public Access to Medical Big Data
100 Pages Posted: 4 Sep 2014
Date Written: September 2014
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
JEL Classification: K23
Suggested Citation: Suggested Citation