OASYS NOW is building a vault so that your data becomes your property again

OASYS NOW is building a digital vault for DNA data. As a result, people who do a DNA test at a commercial company can decide for themselves with whom the sensitive data is shared. But it doesn’t stop there for the young company. The start-up has already won two awards for their idea. In this installment of start-up-of-the-day, co-founder Sara Okhuijsen talks about the need for accessible health data and how to protect it.

In your own words. What is OASYS NOW?

“With our platform, we want people to be able to see for themselves what happens to their data. This way they can decide for themselves with whom their data is shared. These are actually rights you already have under the GDPR (General Data Protection Regulation), but we make them transparent and safe. In addition, our platform is also meant for companies and researchers. We match parties that have data to the organizations that want to use it, such as a hospital or research institute. As an individual, you have an interface on which you can indicate transparently whether you then want to share that data with the authorities. So we want to map out all options and give all possibilities to the individual.”

You recently won six thousand euros. You’d buy DNA tests for that to hand out. How’s that going?

“We have those tests planned. We work with a company that offers health tests. You can sign up for this on our website. You do need to complete a survey about how you view certain aspects of data privacy. Then you can join our beta group to do a DNA test and test our software.”

After you won the Erasmus University Challenge, you got a ticket to a pitch competition in Berlin. How did it go?

“Our pitch was very well received. We then won an investment opportunity of one hundred thousand euros. After that game, we continued to raise investments. We’re closing that now. In the meantime, we have also hired more engineers, so that we can further expand our infrastructure. We already have a prototype. This shows that the technology that we envision works. Now we are building it scalable so we can launch it as soon as possible.”

Why is such a data vault necessary?

“You may request all collected data about yourself from a company. In practice, however, this turns out to be slightly different. Often you only get your order history, for example, while they know much more about you. If people don’t know what happens to their data and they have no control over it, they become suspicious. That is why we also want to work with companies that have the data because it can also be beneficial for them. By providing transparency, we hope to encourage people to share their data. To do this as safely as possible, we have employed a strong team of computer scientists to make the vault completely watertight.”

What challenges do you run into?

“A major obstacle for us is that many people are unaware of genomic privacy. After all, you can learn a lot from DNA data. In practice, when someone does a test, for example at 23andMe, and that company then sells the data to a third party without your knowledge. For example, an insurer could possibly use this data against people by, for example, asking for a higher premium if their DNA shows that they have a greater chance of contracting a certain disease.

In America, there is already a law (GINA) that ensures that authorities cannot do such a thing. However, this law does not apply to life insurers. So it may sound dystopian, but it’s closer than people think.

Here in the Netherlands, we are really lagging behind in this. It is therefore a major challenge to raise this issue with large institutes. There are always some people who think it’s progressive and see the need for it, but it’s a very bureaucratic process. You have to know how to find the right people and things are moving very slowly. We are a start-up and we want to move quickly.”

How did the idea for OASYS NOW originate?

“The idea comes from our co-founder Nima Salami. Together with his parents, he had to flee from Iran to Malaysia, via Sweden, and finally the Netherlands. They had no access to their medical records, requiring his mother to be re-diagnosed in every country to receive medication. Once in the Netherlands, Salami also started his studies at TU Delft. He saw the developments surrounding blockchain and wondered if that technology could not ensure that important health data could be made accessible.”

What sets OASYS NOW apart from the competition?

“We want to involve the individual. This is often seen as too much effort. We see this to our advantage. Be the owner of your own data. That’s what matters to us. Our underlying technology is also aimed at that. This allows data to be sent on demand. A researcher can send a survey and then you can receive it on your phone and fill it out. We are currently thinking about linking this to a kind of point system. Ideally, we would like you to be financially rewarded if you share your data to contribute to research.”

What is your ultimate goal?

“Our vision is to make health data in general fully accessible. That you simply have an app and can always access it and decide with whom the data is shared, wherever you are. In the short term, we will focus specifically on DNA data. In doing so, we also serve a completely different purpose. There is little non-Western data available within medical science. Research data are less representative and reliable for that group. By offering our platform worldwide, we hope to be able to contribute something to that.”