Quoted: on sharing and not sharing genetic information

“I can use my credit card anywhere in the world, but biomedical data just isn’t on the Internet. It’s all incomplete and locked down.”

David Haussler, a bioinformatics expert based at the University of California, Santa Cruz, talks about how genome sequencing has yet to pair completely with the Internet. Haussler, who is also a founder and one of the technical leaders of the Global Alliance for Genomics and Health, is one of the people behind MatchMaker Exchange, an effort to automate the comparison of DNA from sick people around the world. As MIT Technology Review reports, more than 200,000 have had their genomes sequenced, but scientists can’t fully take advantage of that to help them find clues as they look for ways to treat rare diseases, for example. And MatchMaker Exchange, which includes genetic-information-sharing between some hospitals, could be bigger, but there are some obstacles.

One obstacle is technical, what with the sheer amount of data that theoretically would be involved.

“You have what will be exabytes of data around the world that nobody wants to move,” Adam Berrey, CEO of Curoverse, a Boston startup that is developing open-source software for hospitals, tells MIT Tech Review. So how do you query it all together, at once? The answer is instead of moving the data around, you move the questions around. No industry does that. It’s an insanely hard problem, but it has the potential to be transformative to human life.”

But there’s a much bigger issue. How do you get all that data in the first place?

“The limiting factor is not the technology,” says David Shaywitz, chief medical officer of DNAnexus, a bioinformatics company that hosts collections of genetic data, according to MIT Tech Review. “It’s whether people are willing.”

In other words, privacy and other concerns are keeping some scientists from sharing genetic data. How might that be solved?

From MIT Tech Review:

Haussler and others at the alliance are betting that part of the solution is a peer-to-peer computer network that can unite widely dispersed data. Their standards, for instance, would permit a researcher to send queries to other hospitals, which could choose what level of information they were willing to share and with whom. This control could ease privacy concerns. Adding a new level of complexity, the APIs could also call on databases to perform calculations — say, to reanalyze the genomes they store—and return answers.

Illustration from MCT archives


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