What happens to our highly sensitive health and medical information once we give it away to our doctor, hospital or other healthcare service? And what about the situations where we don’t give it away, where it’s being collected without our knowledge?
As Rich and Sarah point out, from wearable technology and DNA analysis for ancestry research, to at-home blood tests and scheduling doctors’ visits online, people now freely share more of their medical information than at any other time in human history. And along with the rise in the use of technology to analyze the details of our intimate medical history comes the increase in opportunities for abuse of that sensitive data.
Turns out, our medical information isn’t very private at all.
At the height of the COVID-19 pandemic, we explored data privacy around telehealth consults. Now, Rich and Sarah blow up ep. 9 of Privacy Files with a “tip of the iceberg” discussion about all the other ways our highly personal medical and health information is at risk in our highly connected world.
Of course, as Sarah points out, tech isn’t going anywhere and it can do great things in the healthcare sector but, as always, it’s important to be aware of the everyday risks to our personal data—and what we can do about it.
Let’s look at some examples of those everyday risks:
Amazon’s new prescription service, RxPass: Billed as a game changer in medical care, RxPass’s $5 prescription subscription for 80 generic medications for Prime members is just another way Amazon can collect sensitive personal information and continue its dominance of the healthcare supply chain and, importantly, its takeover of the data world (think Ring, Roomba etc.). Experts are concerned about the data privacy and legal minefields of RxPass. So, we’re encouraging you to ask, what is Amazon doing with all this information about my medical history and conditions? Am I comfortable with that? You might like our earlier post: Use MySudo to Break the Very Long Chain of Data Amazon Collects About You
Trackers on US hospital web sites: The Markup recently found 33 of Newsweek’s “Top 100 Hospitals in America” were using Meta’s Pixel Tracker, which was sending private medical information back to Facebook without patient consent. That’s data from trackers going back to Facebook from one-third of all leading US hospitals. As Rich points out in ep. 9 of Privacy Files, the type of information includes first and last name, search terms, medical conditions, allergic reactions, appointment times, name and dosage of medications, prescription notes, and sexual orientation. And this information is going to Facebook whether the person has a Facebook account or not. Get the full story. This is similar to what The Markup found in the tax industry too.
Wearable tech: Health apps on wearable tech such as the Apple watch beg the question: Who is really benefiting from all this monitoring? On the podcast, Sarah highlights some recent new features on the Apple watch, including apps for monitoring irregular heart rhythms, blood oxygen levels, respiratory rate, and ovulation. Could the data fall into the hands of third parties? Could it even be used to hike up our insurance premiums? Many suspect yes. Here’s a balanced view and some advice, post Row v. Wade, from Mozilla Foundation.
Blood tests: Sarah says, “Data collection starts from the minute babies are born.” But what happens to blood samples taken by law from newborns in hospital? Listen to the podcast for what Sarah discovered, or head to babysfirsttest.org to learn more about the storage and use of baby blood spots, in which states they become property of state, and how long they’re kept (in New York, it’s 27 years!). Similar privacy concerns relate to at-home blood tests for allergies and personalised diet programs based on blood glucose levels.
Ancestry research: Ancestry research is the second most popular hobby in America after gardening! But what happens to the millions of DNA saliva samples organisations like ancestry.com receive from those keen to find distant cousins? Read the 5 biggest risks of sharing your genetic material for ancestry research.
Online scheduling and check-ins: We rarely fill out paper forms anymore. Instead, we complete digital forms in third party apps. We want our personal information to go straight to our doctor, but it often goes via a third party. What are these third parties doing with the data?
Our goal with the Privacy Files podcast isn’t to spread paranoia, but to underscore data privacy in a way that others don’t. As Rich says to close ep. 9: “Healthcare is a very private matter and it needs to stay that way.”
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