The blog of the 2009 – 2017 Presidential Commission for the Study of Bioethical Issues

On the Frontiers of Technology and Privacy

Latanya Sweeney, Ph.D.

Latanya Sweeney, Ph.D., director and founder of Harvard University’s Data Privacy Lab, has made a career of weaving technology and policy together. Her presentation today provided real-world examples in the realm of consumer data privacy that helped the Commission continue its examination of genomics and privacy.

Sweeney’s exploration of how medical data is handled—mapping out how patient files were widely shared among not just health care providers but also researchers, for-profit companies, and even transcription companies—was widely publicized and one of many works that had a profound impact on U.S. policy. She has appeared in hundreds of news articles and has written numerous academic papers not only on how technology challenges privacy, but how technology can also save privacy. Her work was cited in the original publication of the HIPAA Privacy Rule and has been applauded by consumer advocacy groups; her privacy technologies have been licensed by numerous companies.

“There is no doubt that technology shapes our expectations of privacy,” Sweeney told the Commission. “In fact technology shapes much of how we’re likely to talk about privacy today, and that’s not surprising. What might surprise is that we can craft new technology to shape how society will think of privacy as we go forward.”

In her career as a computer science professor, she fully embraced the public policy impacts of her role in society.

“As a computer science professor I have trained hundreds of young minds,” she recounted. “Most recently I realized that these young computer scientists and computer entrepreneurs are actually policy makers, able to make architectural decisions about technology that dictate real world practice and societal norms.”

She noted that her students have never been trained for this role, underscoring the importance of the Commission’s work.

Sweeney looks at what happened with the 2001 Superbowl in Tampa Bay, Florida, and understands what the Commission’s review of genomic privacy can avoid. “Law Enforcement used facial recognition software to enhance security,” she said. “But this created a public outcry that would have threatened research funding if 9/11 hadn’t intervened. The terrorist attack provided a rationale to continue this research.”

“Disruptions will happen and any of them can explode. Any of these can hit the front page of the New York Times and then Congress will respond,” she concluded. “The Commission’s role in this issue is to get out ahead of the disruptions. Otherwise if one data set has consequences, all data sets are disrupted.”

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This is a space for the members and staff of the 2009 -2017 Presidential Commission for the Study of Bioethical Issues to communicate with the public about the work of the commission and to discuss important issues in bioethics.

As of January 15th, 2017 this blog will no longer be updated but continues to be available as an archive of the work of the 2009-2017 Presidential Commission for the Study of Bioethical Issues

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