Incentives to sell your health data

#1

Yesterday’s Op-Ed piece in the Times is disturbing. I can easily imagine the horror of someone selling their health data to pay medical bills for instance.

" The idea is that once you own your data, you can sell it. Many companies seem convinced that this is the future. PatientSphere, a platform for health care information, purports to offer patients “the ability to not only share” data on their own terms, “but also get paid for it.” PatientTruth similarly bills itself as a health record system and a way for patients to “own” and “monetize” their health data. SUPA, which markets smart exercise bras to Gen Z, offers money in exchange for data. “SUPA is tokenizing the body,” the company website declares."

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#2

Thank you for sharing this article and for opening up conversation on this topic – health data & privacy. I have been thinking a lot about this since Apple introduced the Health app a few years ago, and as Ancestry has been offering DNA testing services. While assisting patrons with genealogy questions, some have disclosed to me that they have gone through Ancestry for the test as they are in the pursuit of understanding their past. As outlined in this article below, there are so many risks that go along with this; where does the data end up? Terms of Service can change. Law enforcement may go through Ancestry to get your information; this data may help profiling; and/or develop pharmaceuticals that they profit from and you do not.

Personally, I have strongly asked my family not to participate in these services. I am concerned that if my family completes these tests, that members of my family will fall in the 80% of people who grant companies like 23andMe the permission to share the DNA data with researcher partners. It is concerning to me because even if I choose not to participate in this test myself, that “research partners” which includes nonprofits and drug companies, that they still have useful data on my family – and me – that can be connected and cross referenced with other data that is already shared.

This is alarming because it makes targeting individuals and groups that much more efficient and dangerous.

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#3

We are the commodity. It’s amazing how damaged the economy is when we have to literally sell ourselves to make ends meat.

This is an excellent point and something that should be taken really seriously. We shouldn’t be narcing on our family members but we need to explain why.

Lastly, I know there are a lot of people with serious illness that may have use of these services, but the model for which they are designed are suspect, I wish we could steer people to services that have to observe HIPPA law.

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#4

On our applications when we talked about threats to privacy, I talked about consumer genetic testing. Even my stepdad, who is super-private and teeters on the edge of conspiracy theorist, accepted one of these kits as a gift and happily sent it off for conformation of his Native American heritage. How long before people who have the “murder gene” are preemptively jailed or worse? Or people who are predisposed to mental illness? Depression? We are on the edge of a slippery slope. Every time we sell our information like this we are selling pieces of our soul.

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