Voices Across America

Protecting the Privacy of Patients

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State: Oregon
Congressional District: OR04


Cancer, Genetic Disease, Mental Health

Issues and Challenges

Andrea has encountered: Access to Expert Providers, Insurance Issues, Medical Discrimination

My Story

Andrea Downing, a tech project manager and breast cancer advocate, has spent the past two years trying to tell the world about this alarming prospect.
Downing is an administrator for a private Facebook group helping women who have a gene mutation that puts them at risk for breast and ovarian cancer.

CNN(health) - "Imagine you have a highly sensitive medical condition that you want, or need, to keep secret. Maybe you've been diagnosed with HIV, or you're trying to kick an opioid addiction. Desperate to get some advice or talk to a kindred spirit, you bare your soul in a Facebook support group for people with your health problem. But what if your membership in a Facebook group you assumed was confidential wasn't private? And what if marketers could easily learn about your diagnosis and your name, email address, location and other identifying information?"

Here is the full story: https://www.cnn.com/2020/02/29/health/andrea-downing-facebook-data-breach-wellness-trnd/index.html

Also DEFCON talk here: https://www.youtube.com/watch?v=lb2p212rc6o

My Motivation and Inspiration

I get up every day working for the leaders and organizers representing a vulnerable population of 164k patients that are trapped on Facebook and want to leave the platform. They need training, resources, institutional support, and policy change.

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