Paper Highlights Legal, Ethical Issues With Open Health Data, Makes Policy Recommendations

Government open data initiatives have made patient health information more readily available online through healthdata.gov and third-party sites that pull from public sources. But coherent legal and ethics policies are lagging data innovation, says a paper recently published in the Berkeley Technology Law Journal.  The author, Sharona Hoffman, a professor at Case Western Reserve University School of Law, writes that public medical data benefits are perhaps better understood than how such data could be used to violate people's privacy, discriminate against them, make erroneous research conclusions, or for litigation.

If regulators are to respond to these concerns, they must consider a variety of stakeholders as well as strike a balance, says Hoffman. If regulation is heavy-handed it deters data custodians from releasing records. But if it's timid then it results in privacy breaches and societal harms, she writes.

The paper presents a variety of policy recommendations. First, Hoffman says an amendment to the Health Insurance Portability and Accountability Act's privacy rule could lessen the risk that anonymized health information is re-identified. The definition of "covered entity" under the rule could be added as a provision that prohibits re-identification. And parties releasing data could also be required to establish a "data release review board"...