If we could find the genetic causes of cystic fibrosis, perhaps this boy would have an easier life (Image: Rex/Burger/Phanie)

Juhan Sonin is donating his DNA to the hunt for medical breakthroughs. He explains why he decided to share his genome, and why you might want to do the same

Could your DNA hold the key to curing potentially deadly childhood diseases? That’s the question being asked by the researchers leading the Resilience Project, which aims to find a handful of people who carry genes for such conditions but never suffered any symptoms. Probing the rest of their genes to find the rare abnormalities that protected them could provide a roadmap to designing life-saving medications.

To find these unique individuals, biologist Stephen Friend and his team need volunteers – a million people who had a healthy childhood – to donate cheek swabs for analysis. Friend and his team will test these samples for 125 debilitating childhood diseases, hoping to spot some “unexpected heroes”, and the volunteers will get a report of what their DNA reveals (take a look at a sample).


So who are these genetic altruists, willing to let medical researchers peer into their genomes for the greater good? One of the first volunteers is 42-year-old Juhan Sonin from Boston, Massachusetts, a software designer at Involution Studios. He believes that stepping up in this way could ultimately help create a future where illness can be treated before we even realise we are sick.

Read more: “Genetic superheroes wanted to fight childhood diseases“

Why have you signed up for the Resilience Project?

To participate in important science with the hope of advancing the human species – at least advancing the collective understanding of us, of our biology.

Ultimately, if we move towards stage-zero detection of illness, then we can concentrate on life rather than worrying about health, healthcare and security. It sounds cheesy and scary – and it is a little. But by diving deeper into genetics in this way, we stand a chance of fighting disease before we even have symptoms. And I’m excited to be a part of that, in some small way.

What would you say to others who are unsure about donating DNA?

Most of us are in denial about our health. And as long as we’re feeling OK, we think we are OK. Generally, that’s true, but then illness strikes, usually when we least want or expect it. Getting involved in genetic projects like this is about being in touch with your body and having a better grasp of how it works – less denial, more understanding.

How would you feel if it turned out you had the gene for a rare illness, and so probably a protective mutation that could inspire new treatments?

It would be simultaneously hair-raising and fabulous. While I would want to know all the details of how that could impact my children, the promise of being part of unravelling and solving a serious disease is splendid.