Sharing DNA data may soon provide people with more than just the answer to whether they’ve got any Irish relatives.
LunaDNA, a startup backed by the genome-sequencing giant Illumina Inc., has asked the U.S. Securities and Exchange Commission to approve its novel plan to pay consumers for sharing their DNA data. It’s a departure from the current standard in which companies like 23andMe charge people to analyze their genes, then use that data for research.
Luna aims to build a DNA marketplace where people could upload their data from genetic-testing companies like Ancestry or 23andMe. The data would then be stripped of identifying details and encrypted. Users would receive shares of LunaDNA, which will house the platform where the DNA data is stored. Researchers would pay Luna to access that data, and some of the profits from research studies would be passed along to shareholders as dividends.
“We’re recognizing data donors as having currency to acquire shares in the company,’’ said Dawn Barry, president of Luna and a former Illumina vice president. “People should be rewarded when value is created from their data. We can’t say something has value and then just sort of take it from people.’’
On Friday, the Solana Beach, California-based startup filed a Form 1-A to offer shares in LunaDNA, which will house the DNA platform. LunaDNA is overseen by LunaPBC, a separate corporation that isn’t selling shares to the public. The filing will be followed by a minimum 21-day period for public comment. After that, if the SEC gives the green light, Luna’s platform will officially launch.
The idea is to increase the incentives for the broad sharing of biomedical data that, Luna says, may help advance science and medicine while encouraging more transparency in how that data is used.
Founded in 2017 by former Illumina executives, Luna has raised $4 million from investors including Illumina Ventures and Arch Venture Partners. While it’s the first company to file with the SEC, Luna isn’t the only startup exploring whether compensating people for their DNA data might encourage more robust donations.
EncrypGen is a blockchain-based DNA marketplace currently in beta testing where data is bought and sold using a custom cryptocurrency called DNA. Earlier this year, the Harvard geneticist George Church announced plans for a company called Nebula Genomics, which would not only reward users for their data but sequence their entire genome as well.
Health records stripped of identifying markers are an increasingly sought-after commodity. Luna is part of a small but growing number of “biobrokers” that give people tools to control the sharing of their health data.
“We pay people to participate in clinical trials — I don’t see why people shouldn’t be compensated for their genes,’’ said Peter Pitts, president of the Center for Medicine in the Public Interest and a former associate commissioner of the U.S. Food and Drug Administration.
Pitts said that as long as companies are upfront with consumers about the way their data is used, paying people for their information seems like a good thing.
“A person’s data is their property,’’ he said.
In the world of biobrokering, though, not all information is created equal.
“Different file types have different share values,’’ said Barry. “Generally speaking, the richer the data, the more shares are allocated to that data.’’
The genotyping data a customer gets from 23andMe, for example, would be worth 50 shares, while a whole genome would equal 300 shares, according to Luna. The company will also collect other kinds of data, like that answered in surveys or collected from fitness trackers. Each share, according to the filing, will be worth about 7 cents. That makes the going rate for a person’s whole genome $21.