Viewpoint: HIPAA limits the potential of cancer genomics

Although large-scale genomic databases can help researchers investigate cancer outcomes, regulatory barriers often stand in their way, wrote Jonathan Hirsch, co-founder of precision oncology company Syapse, and Tom Mikkelsen, MD, co-founder of the Hermelin Brain Tumor Center at Detroit-based Henry Ford Hospital, in an op-ed for The Washington Post.

Data from cancer genomics research often remains siloed because HIPAA laws are unclear as to which data can be shared, according to Mr. Hirsch and Dr. Mikkelsen. In part, HIPAA didn't anticipate the advances modern medicine and data research have made, leaving the law outdated. The two authors noted HIPAA does not specify what type of data can be exchanged in clinical trials, leading hospital attorneys to discourage data sharing.

The HHS should clarify these rules and "make it clear that aggregated de-identified patient data — including patients' molecular, imaging, treatment and outcomes information — can be shared between healthcare providers," they wrote.

"HHS should emphasize that molecular data about a patient's tumor is part of the patient record, just like any other test result. Thus it cannot be subject to 'data blocking' by healthcare organizations such as testing labs, who may want to hoard the information for themselves."

Removing these regulatory barriers to data-sharing would give physicians the tools they need to "make progress against" cancers like glioblastoma, they wrote

Click here to read the full op-ed.

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