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Would you give away your genetic data for science?

Companies now make it possible to sell your genetic information anonymously. But is that in the public interest?
Would you privately sell your genetic profile, or make it freely available to researchers?
Listen20:23

Today, you can swab your throat with a Q-Tip and send it to a lab. Within weeks, you can have your full genetic profile in your hands, revealing your ancestry and, to some extent, your risk of developing certain rare and common diseases. 

It's also vitally important to medical and pharmaceutical researchers, who need human genetic data to advance disease treatment and drug discovery.

But as personal genetic profiling becomes more common, and less expensive, the question becomes how do we, as individuals, manage this information? What do we do with it?

Your genome is, arguably, the most personal of personal data. And there are many reasons you wouldn't want that information in the public arena. But because it's so individually unique, it's not difficult for someone to trace it back to you.  

"There's some problems with putting your data out there," said David Koepsell, the founder and CEO of EncrypGen, a company that promises to keep your identity separate from your genetic data.

"There have been some studies that have shown that in about 40 per cent of cases where genetic data has been put on public databases, researchers were pretty easily able to re-identify it," he said.

EncrypGen claims it allows people to sell their genetic data for scientific study without fear of revealing their identity, because it stores the data on the blockchain — the technology that supports cryptocurrencies like Bitcoin — and conducts its transactions with cryptocurrency.

"A blockchain captures all the transactions," Koepsell said. "We have an audit trail that allows people to track the transaction of that data."
David Koepsell (EncrypGen)

He said they chose to use blockchain technology because it's the safest currently available.

"Blockchains are also good at creating ledgers, which are useful for currency. So you can buy and sell it using a native cryptocurrency."

All of this is possible, of course, thanks to a massive public effort to map the human genome.

At the start of this century, a three-billion-dollar, 15-year-long international effort called the Human Genome Project succeeded in mapping all the genes in the human body. It was the largest collaborative project in the history of biology.

For profit or public research?

To some, the fact that the human genome was mapped to be a public resource raises ethical questions about selling data that serves a broad public interest.

For people who aren't interested in making a profit from their genome, there is Personal Genome Project Canada which also separates data from individual identities but makes it freely available to researchers.

What makes the Personal Genome Project different from other services, such as 23andMe, is that is offers users a full genetic profile for no fee — as long as they have the intent to contribute to a free and open database for research, said Michael Szego, a bioethicist at the University of Toronto and the ethics lead on the Personal Genome Project (PGP).

Szego conceded that it's possible to identify people based on their genetic profile, but said there are people who are willing to contribute to science by opting to make their data public.
Michael Szego (Personal Genome Project Canada)

Where the PGP adds value is that it also provides free genetic counselling to go along with their profile, which other services don't do.

In exchange for this, "their intention has to be to make the data public," Szego said. "We put the research participant in the driver's seat about that.

"Even though they make that intention known right from the start, we don't hold them to it until we give them back all their genetic information.

But after receiving genetic counselling, participants still have the option to back out.

"We'll tell them what we found in their genetic information, and they can decide at that point whether they want to make the data public or not."

Szego noted that it is now illegal in Canada for anyone to discriminate based on genetic profiling, including insurance companies.

He worries that people who might be willing to sell their genetic information might not know what it's being used for.

And perhaps more important, he has ethical concerns about selling genetic data, even if it's data individuals technically own.

"Part of my concern about monetizing it, is that's going to make it harder for researchers to actually have access to the information.

"Is it going to further silo the information so it's going to make medical discovery more difficult?"