Back in 2019, we asked ourselves the question: “What happens to biomedical data that’s collected by online health, wellness and genetic analysis apps?”. We really didn’t like the answer.
Since then, we’ve developed and launched DeBio.Network, an online decentralized platform that connects labs and patients, with data privacy as our strongest guideline.
We see the future of DeBio as a wide network of independent health professionals, advising patients or health-aware people all around. Quote everyone, this is a ‘cool concept’: A network like this will allow people to find the care and insights they need quickly and help smaller scale labs, doctors and counsellors to extend their business.
There are other reasons, though, why we are developing DeBio, and those are at the very core of our ideology: the right to privately own your data and decide yourself what to do with them -data sovereignty.
Data sovereignty is life-changing
“I went to see the school psychologist when I was in 3rd grade. I was told that my results were unlike anything else, but that they remained the property of the school and that my parents were not allowed to look at them.”
This is what one of our advisors told our team during one of the early brainstorming sessions that lead to development and launch of DeBio.
“As a kid, I felt a deep sense of betrayal. I wasn’t allowed to know if something was wrong with me, what it possibly could be, but mostly I seethed at the idea of not being able to own something that was entirely about me and how I function.”
To this day, this advisor still doesn’t know what their school’s counsellor reached. It wasn’t until much later in life that they would be able to get to the root of what caused them to become singled-out for an extended period of their school life.
“I like who I am now, and it’s mostly because of who I was and what I went through back then, so I’ve made peace with that, but sometimes there are more than one way to achieve one result and I would have preferred knowing.”
One of our collaborators has a different story.
“My genetic makeup translates into a couple of traits that are pretty rare. For all that matters to friends and colleagues, it doesn’t make a difference. Unfortunately some people still hold all sorts of outdated or plainly false beliefs that would definitely lead to damaging assumptions, on a personal and professional level, if they got to my files”
Is it a gene that leads to same-sex preference as it was once believed by some (only to be debunked later by another study).
Is it the “criminal gene” or “warrior gene” that sometimes comes into conversation?
Or is it one of the many markers that could be a sign of a predisposition for Alzheimer’s disease? Most importantly, do we have the right to know? (answer: unless our collaborator decides that we do, we don’t)
What do those two stories have in common?
Sovereignty.
There are few types of data that are more intimate than our medical records, and those data should, as everything intimate, remain under the sole control and custody of their owners. Ideologically, it makes sense. In practice, and especially in the wake of the 23andMe data leak, data sovereignty answers concerns that range from discrimination to downright personal safety.
If genetic markers factor into the emergence of certain physical traits and could contribute to certain behaviors, experts know that a predisposition doesn’t set anything in stone. This is also true for traits associated with mental disorders. Your future employer, your insurance company’s actuary, though, are not experts.
Beyond health-related topics, genetic data, psychological evaluations and your medical data in general can point towards your ancestry, ethnicity, moral choices, cultural or religious practices, and even towards what geographical area you are likely to come from.
What would, then, prevent prejudiced individuals from exerting discrimination based on poorly understood science and personal prejudice? Ownership of your data.
DeBio relies on ‘safety in numbers’. Many data owners (you) and many labs mitigate the risk of leaks even if a bad actor is involved.
Most of all, DeBio gives you the key to understanding yourself and doesn’t keep a copy to be used without your consent. DeBio integrates this concept (decentralization) down to a technological level: We’re on a blockchain (our own, in fact), and reinforces it with heavy use of cryptography.
Join the experiment today and try, for instance, re-testing your old 23andMe results -you might learn something new about yourself -but only you will know what it is.
About the author:
Jean-Daniel Gauthier is the CXO of DeBio.Network.