Your DNA isn’t just personal — it’s permanently identifying, impossible to change, and increasingly valuable to insurers, researchers, marketers, and law enforcement. As technology advances, your genetic and health data becomes more profitable to others and more predictive of your future — not just your ancestry, but your disease risk, reproductive potential, even your kids’ health. And yet, the protections around it remain fragile, fractured, and easy to sidestep.
We lost our friend, colleague, and bright light in the breast cancer community Marlena Murphy. To know and work with Marlena was to love her. In 2018, at the young…
This year recognized an unmet need to bring patient community representation to shape the governance of AI Policy, through our diverse and growing coalition of patient advocacy organizations and leaders. To address…
This year’s summit will feature discussions led by healthcare providers, cybersecurity researchers, public health policymakers, representatives of rural healthcare, and more. The event will focus on improving long-term resilience and sustainability of the public health sector, examining effectiveness and efficiency of so-called “best efforts” to date. Using real world examples, we will help to build a better framework for improving healthcare cybersecurity, drawing on public policy, operational experience, and economics.
This webinar features the latest updates from The Light Collective. Tommy Wang, PhD, will moderate a panel of speakers, including Andrea Downing and Valencia Robinson from The Light Collective, Ysabel Duron from the Latino Cancer Institute, and Liz Salmi from OpenNotes.
On April 26, 2024, the Federal Trade Commission (FTC) issued its finalized changes to the Health Breach Notification Rule. Some may remember the prior history of the FTC failing to provide protections for health groups back in 2019. At the time patients raised an FTC Complaint about the privacy of ‘Closed’ groups, yet the complaint went unheeded. It is a notable to see after five years the tides are turning toward stronger consumer protection and health privacy.
Check out this resource from GoInvo which visually describes how your health data are used by different entities. When we as patients lack access to our own complete medical records, one thing to consider is how many others had such easy access to our data.
A 2023 Study by Joanne Kim at Duke University, found that data brokers are marketing highly sensitive data on individuals’ mental health conditions on the open market, with seemingly minimal…
By Christine Von Raesfeld, Founder of People With Empathy In the intricate web of healthcare information dissemination, a legal battle has emerged between the American Hospital Association and the Federal…
In an age where our lives are increasingly digitized, and patients are often reduced to numbers and odds of survival – our stories matter more than ever. We are very…
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