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.
“We’re not talking about life-changing money here,’’ said Barry. “What we’d like to focus on is really the transparency of this model.’’
Editor’s Comment: How Could This Affect Agents?
Financial services professionals who work with all kinds of health or longevity-related products, including life insurance, health insurance, disability insurance, long-term care insurance, annuities and life settlements, have an interest in who has access to genetic information.
Insurers have dreamed of having a reliable way to predict people’s health and estimate their life expectancy for decades.
Robert Heinlein, for example, was one of the most popular science fiction writers in the 20th century. He started out as an agent for Aetna Life Insurance Company. In his first published story, “Life-Line,” which appeared in 1939, he wrote about the invention of a “chronovitameter”: a device that could determine an individual’s date of birth and date of death.
Life settlement firms use teams of actuaries and others to try find gaps between the life expectancies implied in the life insurance policies people own and those people’s actual life expectancies.
The U.S. government has tried to put sharp restrictions on U.S. insurers’ use of genetic information, in the Genetic Information Nondiscrimination Act of 2008 (GINA). GINA prohibits health insurers and employers from treating some people differently than how they treat others based on those people’s genetic information.
Federal law puts no restrictions on U.S. insurers’ use of genetic information in health underwriting.
YouSurance, a Minneapolis-based managing general agency, said earlier this week that it will use “epigenetic” information, or information about how chemicals called “methyl groups” have, marked the ribbons of DNA inside people’s cells, to create what it says will be unusually accurate estimates of each life insurance applicant’s biological age.
For the most part, U.S. insurance underwriters appear to be taking note of genetic testing reports that show up in applicants’ medical records but not actively seeking or conducting genetic tests of their own.
The Luna approach could create both opportunities and obstacles for insurers.
Luna, or a similar service, could serve as a clearinghouse for the genetic information of people who gave the clearinghouses permission to share their information. That could make using genetic information easier; lead to helpful discoveries about the relationship between genes, life expectancy and health; and put the genetic information clearinghouses in a position to charge insurance underwriters fees for access to the genetic information.
In theory, agents could be the ones in charge of persuading consumers to give insurers access to the clearinghouse data.
— Read What Genetic Testing Means for Life Insurers, on ThinkAdvisor.