The Value of Private Health Information


Lately Facebook has been giving me ads for diet DNA products – products (like Vitagene) that can take your DNA results from sources like 23andMe or AncestryDNA and analyze them to suggest a customized diet based on your DNA. I imagine this is because I’ve been spending a lot of time looking for smoothie recipes, which of course raises the spectre of targeted advertising, but it particularly got me thinking about the privacy issues surrounding more personalized and intrusive creation and use of health data. 

Screenshot of Vitagene Facebook ad
Screenshot of Vitagene Facebook ad

In February the Chronicle of Higher Education reported on the backlash after Oakland University announced that students would be required to wear a “BioButton” to measure temperature, respiratory rate and heart rate and to alert them if they came into close contact with another button wearer who tested positive for COVID-19. A petition later led the college to back down and strongly recommend, rather than require, the buttons. 

The Guardian recently reported that an analysis of 20,000 mobile apps found that “nine out of 10” “harvest user data.” The story discusses a British Medical Journal analysis of apps from Google Play Store that track things like step and calorie counters, health conditions, symptoms and menstruation, according to The Guardian. 28% of the apps did “not provide any sort of privacy statement on Google Play” either, according to the story. The semi-good news is that only 4% “actually transmitted data to a third party” – “usually a user’s name and location information.” Unfortunately, the same study found that “only 1.3%…of user reviews raised concerns about privacy.” 

Personalized diet, health and medication has been reported on in The New York Times (here and here), Scientific American, and NPR among, I’m sure, many others. The attraction of this option seems obvious – I imagine anyone who has struggled to lose weight or found that standardized medical care didn’t work well for them can see the appeal of a truly individualized plan, especially one based on something as detailed as your DNA. But, even assuming they work, what’s the potential downside? 

Image by Gordon Johnson from Pixabay

I’ve written before about some of the potential concerns about sharing your DNA with home-based testing kits, including the potential damage if this information is shared with insurance companies and discussing the fact that for a non-trivial percentage of us, there really are scary things in our genomes,” according to Hank Greeley of Stanford. The idea of actively sharing them to glean medical information is, presumably, even more risky. These customized diet companies aren’t just testing your DNA to look at your ancestry, they’re specifically examining your genetic health. How is this information shared? How might it be shared in the future? Even if these companies aren’t sharing your data, how secure are they? What might be in your genetic profile that you don’t want others to know? What might be in your genetic profile that you don’t even want to know yourself? How might it be used against you? 

As I discussed in my last post on DNA, patrons often turn to librarians for information – including information about their own genealogical pasts. As librarians, we should be familiar with the potential concerns around DNA testing and be ready to provide patrons with resources and information about these concerns. And, in cases like the BioButton, we should be prepared to advocate against (or at least raise awareness of) potential privacy issues in our own communities. Because of our ethical responsibilities as librarians we may be more aware of – and more likely to spot – potential privacy concerns. When we see them, we should be prepared to speak up and call attention to them. And, as always, be prepared to educate patrons about them. 

I suspect we will see more and more options to customize medical care and health efforts based on our DNA and other medical data, and we should carefully consider the potential privacy implications of these efforts, especially when they occur outside of the sanctity of a doctor’s office and/or are driven by a company which may have interests beyond our health. As I like to prompt my students to think about, what is the value of this information – to me and to others? And, given that value, who can/should I share it with? 

“Information possesses several dimensions of value, including as a commodity, as a means of education, as a means to influence, and as a means of negotiating and understanding the world. Legal and socioeconomic interests influence information production and dissemination.” – ACRL Framework for Information Literacy for Higher Education

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