Your Personal Health Information Isn't as Safe as You Think It Is... Should You Care?
Today's Twitter thread summarizes my latest publication in the American Journal of Medicine with co-author Arnold J. Rosoff, building upon a series of papers and presentations we've done over the past couple years on data privacy in the most personal parts of your life: your body and your health...
Google is tracking your every move. Facebook is collecting your most personal data. But did you know about the health care industry?
What does it mean for your privacy? Your safety? Cost of living?
In @amjmed, Skip Rosoff & I peek into the future…https://t.co/oblqf2Nx62 1/— Anthony W. Orlando (@AnthonyWOrlando) March 12, 2019
You might be thinking, “Doesn’t HIPAA protect my health information?”
It used to.
That was before smartphones…and fitness trackers…and direct-to-consumer genetic tests…and diagnostic apps and websites…took your health info out of the doctor’s office & into the world... 2/— Anthony W. Orlando (@AnthonyWOrlando) March 12, 2019
But, so what? Isn’t privacy dead anyway? Isn’t it old-fashioned? Why put the genie back in the bottle?
What’s the harm?
Actually, what’s at stake is all that we hold dear about the health and welfare of society… 3/— Anthony W. Orlando (@AnthonyWOrlando) March 12, 2019
First, the health care system is built on confidentiality.
Do we want patients not to trust doctors? Subjects not to trust researchers? Public trust in collective institutions to fall even lower that it already is? 4/— Anthony W. Orlando (@AnthonyWOrlando) March 12, 2019
Second, the more info is shared, the more people can discriminate against us. As @jrobertsuhlc & @elizabethAweeks show in their important new book, there’s a LOT of health-related discrimination that’s completely legal and/or undetectable...https://t.co/HBpoci5KvM 5/
— Anthony W. Orlando (@AnthonyWOrlando) March 12, 2019
Third, tech can have opposite of intended effect: Harm health itself.
Consumer devices are rarely regulated as "medical," but people often treat them as such. Evidence is mixed whether even the best apps improve outcomes. And coming generation of tech is far more invasive… 6/— Anthony W. Orlando (@AnthonyWOrlando) March 12, 2019
Fourth, geographic info can endanger our physical safety. Many consumers don’t understand when their location is being shared.
And even if they’re not sharing it, very often it’s not encrypted to prevent hacking… 7/— Anthony W. Orlando (@AnthonyWOrlando) March 12, 2019
Finally, who gets access to tech? Who understands how to use it? Most likely, folks who had best health, most wealth, least discrimination to begin with.
Inequality could get a lot worse. Esp when employers & insurers penalize any who don’t join “voluntary” brave new world… 8/— Anthony W. Orlando (@AnthonyWOrlando) March 12, 2019
So, what can we do about it?
If they’re “medical devices,” @US_FDA is supposed to regulate them, but they’ve excluded most “digital health” from that definition because, allegedly, they’re “low risk”… 9/— Anthony W. Orlando (@AnthonyWOrlando) March 12, 2019
Congress seems to agree. As Skip & I show in our American Journal of Law & Medicine article for @ASLMENews, the 21st Century Cures Act further muddles the statutory language, but it winks at giving most of these “healthy lifestyle” products a pass…https://t.co/2v0xBo5OvC 10/
— Anthony W. Orlando (@AnthonyWOrlando) March 12, 2019
What about the EU’s new GDPR?
Consumers can access & delete their data, but will they?
If they do, can they understand it & act on it?
Unlikely.
Esp because discrimination & health & civil rights can’t be addressed by one user acting alone. These are collective rights… 11/— Anthony W. Orlando (@AnthonyWOrlando) March 12, 2019
So we need collective solutions. All relevant agencies working together. We’re talking to some & they’re eager to address the issue.
With 2020 election heating up, consider whom the agencies work for…and who has the vision we need for privacy, safety, & justice in health. 12/12— Anthony W. Orlando (@AnthonyWOrlando) March 12, 2019