UHLC Prof Evans discusses privacy issues during White House summit on gene research

UHLC Professor Barbara Evans prepares to enter White House where she participated in a summit on genetics and health care.

Feb. 29, 2016 - University of Houston Law Center Professor Barbara Evans joined other leaders in the field of genomic health care last week at the White House to participate in the Precision Medicine Initiative Summit.

One year ago, President Obama launched the Precision Medicine Initiative to accelerate a new era of medicine by harnessing genomic and other information to help identify the best treatment for each patient, to resolve the role of genetics in chronic diseases such as cancer and diabetes, and to understand rare genetic disorders for which there are currently no cures.

On December 18, the president signed bipartisan legislation providing more than $200 million for the PMI, and the National Institutes of Health already is taking steps to develop a participant-engaged, data-driven research effort that aims to create a million-volunteer data resource to support research in the area. 

The White House summit Feb. 25 brought together leaders from the Federal government, private sector, academia, research organizations, and patient advocacy groups to discuss next steps in the Initiative.

John Holdren, director of the White House Office of Science and Technology Policy, and Francis Collins, NIH director, opened the meeting with a progress report on the PMI followed by comments from the president.

“We’re just in the infancy of precision medicine,” Obama said, noting that the goal is to figure out how to break down structural and institutional barriers that are keeping humanity from making big leaps in advancing medicine and human health.” 

The meeting later moved to smaller, informal roundtable discussions where participants shared their individual views and described the work their organizations are doing in the area.

Evans, George Butler Research Professor and director of the Center for Biotechnology and Law at the UH Law Center, is a leading thinker on data privacy and access to data for construction of large-scale health information systems for research, regulatory science, and public health. She participated in the roundtable discussion on privacy and data security and called for a new consumer-driven approach to creating large-scale data commons (information resources) that precision medicine will require.

“There are multiple, viable pathways for developing medical information commons and it is important, in the early phases of the PMI, to have the wisdom to let them evolve in parallel,” Evans says.  “Publicly funded efforts like the proposed NIH million-person participant group can ‘jump-start’ discovery and produce swift results.  But long-term sustainability is a concern with grant-funded efforts, as is public trust in view of the highly personal genetic, health, and lifestyle-related information that precision medicine requires.  

 “Twentieth-century regulatory and ethics frameworks tended to cast data holders - hospitals, research institutions, insurers and other entities that possess people’s data - as prime movers in assembling large-scale data commons for research and regulatory science,” Evans notes. “It is not clear that this old model is ultimately best for the big-data challenges we are facing in the twenty-first century.”

Her work, she explains, is exploring the promise and challenge of enabling consumer-driven data commons: large-scale data resources of the people, by the people, and for the people, who would themselves control the terms of use through collective self-governance processes. 

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