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Data in their DNA: Repositive.io Builds Common Ground for Genomic Research

What do you get when you put the world’s brightest scientists in a room, arm them with the most advanced tools of their trade, and get them to work on the world’s hardest problems? Not much without data.

At least that’s the thought behind Repositive.io, the first portal for researchers to browse the world’s human genomic data. Fiona Nielsen, Repositive’s Founder and CEO, has a vision of the future where researchers can browse millions of datasets, all in a centralized place, to find the data they need to keep their studies moving forward.

“It doesn’t matter how much data you can produce yourself,” Nielsen says. “And it doesn’t matter how fast you can run an algorithm on it. Because if you don’t have enough of the right data, you’re not going to get to anywhere with your research.”

Before Repositive, the only way scientists could get a hold of the data necessary to power their research was by acquiring datasets themselves, a process that was time-intensive and not always fruitful. And even if other research centers had relevant data and were willing to share it, there was no simple way to find these sources in the first place.

Nielsen says this issue has been pervasive in the world of research for decades. “No single researcher has the incentive to step out of what they’re doing day-to-day to make it easier to access or find data,” Nielsen explains. “No one was addressing the general problem instead of doing their particular research.”

After experiencing data bottlenecks with her own research, she knew it was time to be the change she wanted to see in the world. So in 2014, Nielsen started DNAdigest, a nonprofit organization to centralize genomic datasets for researchers.

But in founding DNAdigest, Nielsen faced a new type of bottleneck: the notorious difficulty of raising money as a freshly minted NPO. After months of soliciting donations from wealthy individuals and running a crowdfunding campaign on Indiegogo, the DNAdigest project found a mere £20,000 in its coffers.

“We knew we could make a solution that would work in this space, but it required a lot of upfront investment,” says Nielsen. “So we spun off Repositive as a social enterprise, building the mission and values of the charity into the articles of association of the company.”

And Nielsen was onto something. Beyond the social good that comes with centralizing data for researchers, Repositive tapped a huge source of economic value as well. “In all these data-intensive research areas, if researchers are spending time looking for data, it means their whole research pipeline is being delayed by months,” she says. “There’s real money value to research organizations and universities to shorten that time to access data.”

As the enterprise has grown, so too has its power to connect users to the data they need. Much like GitHub for developers, the more researchers who use the platform, the more data they have access to, creating a virtuous cycle of data sharing.

Nielsen sees the far-reaching applications of such a rich repository of data. The field of personalized medicine, for example, has largely kept to the theoretical side of research, having been held back by the dearth of data. But now researchers are on the cusp of making huge leaps forward. “Thanks to all the data-intensive research being done in personalized medicine, eventually we’ll be able to treat everyone individually,” Nielsen explains. “We’ll be able to make sure drugs are only given to people with a positive response to it. But that future is not possible if the data is not accessible.”

Even more than the practical applications, Nielsen derives a sense of gratification from the feedback she’s gotten first-hand from researchers using Repositive. “I like to create the tools that are useful,” she says. “And knowing that what we’ve created is useful in the world, that is really my satisfaction.”