BOSTON — Anita Allen, professor of law and philosophy at the University of Pennsylvania, kicked off the 2022 HIMSS Healthcare Cybersecurity Forum on Monday, with an insightful and thought-provoking discussion about privacy patient privacy in the age of widespread data sharing.
Allen said before the conference that she wants to use her expertise in law and bioethics to tackle issues related to healthcare and technology, and will focus on discussing discussion of data exchange and patient privacy.
In her keynote, Allen focused on the changing story of privacy and data sharing, which she has researched and written about for 35 years.
“Attitudes about health data privacy are changing rapidly,” she said. “They’ve changed rapidly. And disclosure is becoming the new standard.”
“People are increasingly disclosing their personal health information through wearables, social media and other technologies, and researchers and governments are actively encouraging sharing,” she said. share that.
But the desire for privacy is highly personal and cannot be disregarded.
“Even though the old ideas about privacy and health are outdated, that doesn’t mean they’re wrong,” she said.
Allen said the new story may be favored by larger companies and the government making the point that data sharing is a better path to health. But privacy interests can be “treated lightly” by those pushing the new story forward, and it warrants deeper consideration.
She launched the All Us Research Project, part of the National Institutes of Health’s Precision Medicine Initiative, as a new narrative project.
It is building a database of planned 1 million diverse Americans, from all walks of life, to disclose their phenotype and genetic health data to its own database. government as a source of research, but we don’t know exactly what the data will be used for.
Allen said she believes a lot of thought is required and that maintaining a balance between the interests of privacy and disclosure presents a dilemma.
“The balance is what saves us,” she said.
Academic perspectives, she said, are heavily focused on this dialogue to explore what is needed to strike a balance between privacy and data sharing.
“We cannot think of equilibrium as an objective test or an objective process. It is a subjective and political decision or assessment; it is an assessment; it is not a test. test or an objective standard.”
After exploring three examples of how scholars approach balance and the methods they apply, she shared some personal examples from her life and work.
The new narrative affects not only data privacy, but also the “basic experience of going to the doctor.”
She asked conference attendees to understand what elements of the old and new privacy stories they accept.
“We figured people didn’t care much about the privacy of their health data, so we just walked up to them in the waiting room in front of everyone else and started asking questions,” says Allen. them about their tumor.”
Andrea Fox is the senior editor of Healthcare IT News.
Email: [email protected]
Healthcare IT News is a publication of HIMSS.
