Get In On the Sale of Yourself

After watching medical records get traded for billions of dollars, a tech entrepreneur says he can help you grab a share of the bounty.

Richie Etwaru has a message for you: You’re getting ripped off.

In a secretive business that’s little known outside the health care world, medical informatics companies like Optum and Iqvia and Symphony Health are vacuuming up your health data, stripping your name and a few other identifying details off of it, bundling it with millions of other people’s information, and selling it to pharmaceutical companies and other researchers.

The most private of your private bits — that oozy rash, the prescriptions for incontinence or ringworm, even those gut-wrenching records like a positive HIV test or cancer diagnosis — are bought and sold in a thriving marketplace that, in aggregate, is estimated in the billions of dollars. Even though the data emerged from your body, it doesn’t belong to you. That data originated in transactions you or your insurance company paid for, but you don’t see a cent of those sales.

It’s a moral outrage, Etwaru says. A former chief digital officer at Iqvia, he says what he learned there left him nauseated. In his view, we are all just digital serfs. As we get sick and take pills and see doctors and recover, we generate valuable information that is sold for someone else’s profit.

His startup, Hu-manity.co, which plans to launch its app at the end of this month, is his and cofounder Michael DePalma’s effort to replace what they call data feudalism with a more transparently capitalist relationship. Etwaru wants you and millions of others to use the app to claim your health care data as your property, using the much-hyped technology of blockchain, and enter that marketplace as a participant. Hu-manity.co’s app is a way to say: Go ahead, sell my data — but cut me in on the deal.

When Etwaru describes his vision, it’s like listening to three TED Talks at once: one about medical research, one about blockchain, and one about social justice. The tone is messianic, even by the standards of tech founders. Hu-manity.co’s launch campaign calls for data ownership to be enshrined as the 31st human right (adding to the 30 human rights adopted by the United Nations). The idea is that with our rights protected by property laws, we’ll be liberated from digital servitude. We will till the fertile soil of our bodies and lives and sell our informational harvest to the highest bidder.

“This seems like a really smart, really good idea,” says health data scientist Ernesto Ramirez, an early member of the quantified-self community who has long been involved in research with health and fitness data. “I would love it if that’s the way the world worked!”