BOSTON – Anita Allen, professor of law and philosophy at the University of Pennsylvania, kicked off the 2022 HIMSS Healthcare Cybersecurity Forum on Monday, with a nuanced and thought-provoking discussion on patient privacy in an era of widespread data sharing.
Allen said ahead of the conference that she wanted to bring her expertise in law and bioethics to bear on problems of great concern to healthcare and technology and would focus her discussion on data exchange and patient privacy.
In her keynote speech, Allen focused on the shifting narrative of data sharing and privacy, which she has been studying and writing about for 35 years.
“Attitudes about health data privacy are rapidly changing,” she said. “They have rapidly changed. And disclosure is becoming the new norm.”
People are increasingly disclosing information about their personal health through wearables, social media and other technologies, and researchers and the government are actively encouraging that sharing, she said.
But the desire for privacy is highly personal and cannot be overlooked.
“Even though the old ideas about privacy and health are old, it doesn’t mean that they’re wrong,” she said.
Allen said the new narrative could be favored by larger companies and the government that offer the perspective that sharing data is the better path to health. But privacy interests may be “lightly treated” by those pushing the new narrative forward, and it warrants deeper consideration.
She brought up the All of Us Research Project, part of the Precision Medicine Initiative under the National Institutes of Health, as a new narrative project.
It’s building a database drawn from a planned 1 million diverse Americans, of all walks of life, to disclose their phenotypic and genetic health data for a government database as a research source, but we don’t know exactly what the data will be used for.
Allen said she believes a great deal of reflection is called for and that maintaining balance between the interests in privacy and in disclosure offers a dilemma.
“The balancing is what saves us,” she said.
Scholarly perspectives focus heavily on this dialogue exploring what it takes to create a balance between privacy and data sharing, she said.
“We can’t think about balancing as an objective test or an objective process. It’s a subjective and political determination or assessment; it’s an assessment; it’s not a test or an objective standard.”
After exploring three examples of how scholars have approached balancing and their applied methodologies, she shared some personal examples from her life and work.
The new narrative affects not only data privacy, but it affects “the basic experience of going to the doctor.”
She asked the conference attendees to understand what elements of the old and new privacy narratives they embrace.
“We assume that people don’t mind so much the privacy of their health data, so we just walk right up to them in the waiting room in front of other people and start asking them questions about their tumors,” said Allen.
