Illustration by Gwendal Le Bec

How Much is Your DNA Worth?

Why some genetic information services want to be free.

For Laurie Simone, the value of DNA data was obvious right from the start. In the spring of 2013, she paid $99 to get her genes analyzed by 23andMe, so she could learn about her ancestry and her risk for various diseases. It was well worth the price, she says: “I’ve always been fascinated with genetics.”

Like roughly 85 percent of the more than two million people who’ve signed up for the service, she also clicked “yes” on the option that allows 23andMe and its partners to use her data for medical research. The search for new treatments for disease depends on the generosity of people like her.

So does the business model of 23andMe. A well-organized, highly curated database of genetic data from millions of people is a potential goldmine for drug company researchers and other scientists. In 2015, the drug company Genentech agreed to pay 23andMe as much as $60 million for access to its particular goldmine. 23andMe also has research arrangements with Pfizer and other pharmaceutical companies, and its in-house research team is combing through the data for insights into cancer, skin disease, heart disease, and other conditions.

Simone loves the idea that her data, stripped of her name and other details that could identify her and pooled with data from millions of other people, might point to new cures. But she also wants to know where her information is going and who is using it — something 23andMe doesn’t tell her. “They use all the data that you paid to get sequenced, and you have no idea what they’re using it for,” she says. “It would have been nice if they were providing me with information about what my data was going to be used for.” Recently, she un-clicked that option, withdrawing from future research with 23andMe.

Instead, she found a way to be told more about where her DNA is getting used—and she is getting paid for it too.

She joined up with DNAsimple, a startup with a new idea about the value of genomic data. This little company doesn’t do any sequencing itself. Instead, it’s a matchmaker between volunteers and researchers, providing anonymity for participants and useful information for scientists. Its customers are scientists and researchers, who pay for access to people they want to study. Regular people like Simone are the data suppliers: DNAsimple shares $50 of the fee with each volunteer. In August, Simone joined a study of gene variations that influence the way people react to various drugs. She answered a few questions and mailed in a spit sample.

Even though the money wasn’t what motivated her, the fact that it’s available for her is a telling sign. For years, we’ve been hearing that hordes of regular Americans will begin getting their genomes sequenced to learn about themselves, their families, and their health—and just for fun. But even though sequencing companies have pushed the price for a fully sequenced and interpreted genome down below $1,000, that wave of mainstream customers has not materialized.

DNA analysis is still a niche market — or really, a cluster of niches: people with diseases who need answers, genealogy buffs, quantified-selfers and aficionados like Simone, who just started studying to become a genetics counselor. For most people, there still isn’t all that much you can do with your sequence. In the United States, only about 10 million people have had their genomes analyzed so far. That includes a range of services, including 23andMe’s “genotyping,” which scans a limited number of genes; “whole exome sequencing,” an analysis of all your genes; and “whole genome sequencing,” which decodes every bit of DNA—not only your genes but also the portions of your genetic code that help regulate the activity or “expression” of your genes.

In the meantime, the demand by researchers for large, well-curated databases of genetic and health information, set up with proper permissions for studies, is growing. Drug companies may spend years and millions of dollars to find the right people for studies of highly targeted drugs; consumer DNA databases offer a possible shortcut. Besides 23andMe’s deal with Genentech, Geisinger Health System, a health care provider in Pennsylvania, struck a partnership to recruit more than 100,000 people to be sequenced by the drug company Regeneron, and Ancestry.com did a deal with the Google health spinout Calico.

The mismatch between the supply of DNA sequences and researchers’ demand for it may be temporary. But in the meantime, DNAsimple and a few other little startups are banking on it. By offering to pay you or otherwise compensate you for your unique biological contribution, these companies are calculating that the secrets hidden in your genome might be worth more to scientists than they are to you.

Sequencing for the masses

For a long time, DNA sequencing was like any other lab test. If you want data about your body, you pay for it — whether that’s a $50 cholesterol test or a whole genome sequence, which includes almost every one of the three billion base pairs in your chromosomes. That pay-for-data setup is still essentially the business model for companies like Veritas Genetics, which charges $999 for a complete genome sequence and analysis, and Human Longevity Inc., which typically charges $4,900 for a complete genome sequence and analysis, plus comprehensive MRI scan.

Aiming at a more mainstream audience, companies like 23andMe introduced a new vision: charging a modest amount for analysis along with interpretations aimed at ancestry, health, or pure curiosity. A 23andMe report is $99, or $199 for a deluxe version that includes health information. The new company Helix, a spinoff of sequencing equipment maker Illumina, just launched another variation: A flat $80 gets you exome sequencing and a simple summary of your information. You can then pick and choose among deep-dive reports such as personalized nutrition or an estimation of your Neanderthal ancestry, each priced between $25 and $250.

But a third model — call it sequencing for the masses — turns the market on its head. In this vision, DNA data is treated a lot like other personal digital information: If it’s collected in bulk, anonymized, and aggregated, it can be mined for value. Just like Facebook lets you use a fun product for free because your clicking and sharing can be monetized, these little startups and university-based projects pay you for your data, either with cash or with new knowledge.

The mismatch between the supply of DNA sequences and researchers’ demand for it may be temporary. But in the meantime, DNAsimple and other startups are banking on it.

The newly launched Gencove charges just $60 for a low-fidelity version of your genome sequence, plus an analysis of the microbiome in your mouth. You get back all your raw data files to do whatever you choose with them; Gencove also provides a report on ancestry and a few fun facts, like whether your genetics suggest you’re a morning person or night owl. The $60 defrays the cost of sequencing, but the real revenue will come from researchers who “want a custom analysis,” says CEO Joe Pickrell. “It won’t be the consumer that pays for some of this.”

Another company, Genos, charges $499 for an exome sequence. But it also offers customers a chance to earn back their outlay through scientific studies that pay $50 to $200 a pop. “Pharma has been paying a huge amount of money to get quality data,” says Genos founder and former executive chairman Cliff Reid. “Cutting the individual in for a small amount of that money is surprisingly doable, from an economics point of view.”

The test kit that Genos sends to customers who want their exome sequenced for $499. They can recoup the cost if their data is useful to scientific studies. (Courtesy of Genos)

In a slightly different arrangement, the San Diego startup Portable Genomics partners with charities like the small cystic fibrosis nonprofit CFtechnology.org to build data troves useful for particular areas of health research. In a pilot project, the company plans to arrange for gut and lung microbiome analysis, and ultimately exome sequencing, of people with cystic fibrosis. It plans to provide apps for the volunteers to collect granular data about symptoms, lifestyle, behavior, and treatments. Each participant controls his or her own data, and will be compensated when it’s used in a study by a for-profit entity. Portable Genomics founder Patrick Merel estimates that a drug company eager to scour the genomes of people with extremely unusual conditions might be willing to pay $5,000 to $20,000 per person, which would be split among his company, the nonprofit, and the volunteer.

Everybody’s looking to boost the numbers of people willing to be sequenced because big numbers will accelerate the pace of genetics-based research. The fastest and most ethical way to do it is to give the data donors a cut of the revenue, argues Merel. “Everyone in the chain is making money on the back of the patients,” he says. “If personalized medicine is to succeed, it needs to have the patient at the core of strategy, including the business model. Otherwise it will fail.” Like Facebook or Instagram, genomics companies could give away the basic service for free — in this case DNA sequencing — and make money by anonymizing, aggregating, and organizing the data for other users who find it valuable. “The free model works!” says Merel. “There’s no reason why personal data, including genomics, can’t be the same.”

That’s the gamble, anyhow. “We see a lot of companies being built on the potential for data to change the way health care is delivered and therapeutics are discovered,” says Bill Evans, managing director of the venture fund Rock Health, which specializes in digital health. But it remains to be seen, he says, whether paying people to participate will hasten that process.

It’d be a major shift in thinking. After all, companies such as Helix and 23andMe are still betting that there is an untapped mass audience for sequencing — that the demand for self-knowledge through DNA data will only grow. They’re not abandoning that model any time soon. Offering financial incentives “is an interesting model,” says Helix co-founder and senior vice president James Lu. “We’re waiting to see how it scales, and see if it becomes something over time.”

“The richness of my genetics benefits one person the most, and that is me,” agrees Rodrigo Martinez, chief marketing and design officer at Veritas Genetics. Veritas aims to provide customers with information that connects with their everyday lives, sort of like visiting a nutritionist. As Lu puts it: “You have to deliver experiences people want, so that they ask to be sequenced.”

The downside of dollars for data

After just a year in business, DNAsimple has about 20,000 volunteers and has matched about 700 people with studies, says CEO Olivier Noel. Some bigger companies have signed on to this new model, too: Genos was recently acquired by NantOmics, a subsidiary of the large health conglomerate NantWorks.

But it could turn out that compensating volunteers isn’t necessary. For many people, the chance to share information may be even more enticing.

Laurena Townsend and her family have already made $260 by joining DNAsimple studies, but she says the money’s not the real motivation. It’s the chance to save a life.

Two years ago, Townsend’s daughter died suddenly of hypertrophic cardiomyopathy (HCM), a disease of the heart muscle that sometimes kills apparently healthy, athletic young people. And both of her two surviving children have been diagnosed with HCM.

The genetics of the disease are murky. Townsend has a mutation that puts her at risk for it, but her heart is fine. Only one of her children with HCM has the mutation. Townsend and her children donated their sequence data in hopes of changing the outlook for other families dealing with HCM. “It was mostly about trying to help be part of the answer,” Townsend says. “It was something they could do.”

It could turn out that compensating volunteers isn’t necessary. For many people, the chance to share information may be even more enticing.

Indeed, offering people money for their DNA might even backfire. While 60 percent of people are willing to share their genetic data for medical research, only 41 percent would do it for money or other compensation, according to a recent survey conducted by Rock Health.

Tapping into that deep altruistic impulse is the goal of efforts like DNA.Land, an academic project that asks people who have already gotten DNA readouts from 23andMe, Family Tree DNA, or Ancestry.com to donate their genetic data. The data is used for efforts such as a study of breast cancer, launched in April, that also includes the first-degree relatives of people with the disease — a much larger (and possibly more informative) pool of people. More than 6,000 people have joined, answering questions about who in their family has had breast cancer, and what the result has been — making it possible to find new connections between genes and this cancer.

Such projects are not counting on generosity alone to pull people in. The DNA.Land team runs an additional analysis on the volunteers’ data to give them new information about ancestry, link up relatives who have been sequenced by different companies, and let people see how traits like their actual height or intelligence compare to what the genetic analysis predicts.

The team, including scientists at Columbia University and the New York Genome Center, is careful in its explanations of how people’s information is used and what it means. “We develop a long-term relationship with our participants,” says Yaniv Ehrlich, a professor of computer science at Columbia and member of the genome center. “We hope it encourages people to feel respected.” More than 59,000 people have donated their data. “Digital means scale,” says Ehrlich.

The latest project at the startup DNAsimple is also meant to entice families to create pools of data that can be extremely valuable for genetic research. Beginning later this month, DNAsimple will offer the family members a report about their ancestry and traits — so you could learn whether you share a baldness pattern with your uncle, or whether you really have your mother’s eyes. If it takes off, it might even set a lower price for DNA data: A swap of information for more information, with no money exchanged at all.