What About Sharing Clinical Data?

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IN RESPONSE to a question during the Lurie Cancer Center OncoSET Symposium about sharing clinical data, Warren Kibbe, PhD, Acting Deputy Director of the National Cancer Institute, acknowledged “it is still very problematic,” but “there is an opportunity for meaningful use.” He said that the National Cancer Institute is working with Medicare and Medicaid services. “They are a tremendous potential engine for how we start to harmonize all of these data.” 

David Solit, MD

David Solit, MD

Contradictory Mandates 

“WE SEEM TO BE UNDER two separate contradictory mandates,” commented David Solit, MD, of Memorial Sloan Kettering Cancer Center in New York. “One mandate is to share all clinical and genomic data generated within the context of clinical sequencing efforts and clinical trials, which seems superficially like a great idea, as it could accelerate the identification of new drug targets and, in turn, the development of new therapies. But the problem with sharing genomic data is that next-generation sequencing data can be used to infer quite a bit about not just the patients profiled, but also their family members. There is concern that shared information about germline alterations is potentially discoverable by other family members or others. If we also share extensive clinical data about individual patients, it may be absolutely impossible to ensure patient privacy. So, on the one hand, we are asked to share data for a worthy cause. On the other hand, we are asked to ensure patient privacy, also an important goal. How do you reconcile those two, especially within the context of a health-care system that, going forward, may not protect patients with preexisting conditions from being discriminated against for health insurance coverage?” 

“Philosophically, we all agree having that information available as freely as possible is important. But we also need to protect patients and their families,” Dr. Kibbe responded. Safeguards currently in place “are incredibly important,” he added. “Without them, it becomes very hard to share some of those data.” ■

DISCLOSURE: Dr. Solit reported no potential conflicts of interest. 

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