Even if you’ve never heard of IQVIA, the company most likely knows some things about you—if only in anonymized form. As Harvard University fellow Adam Tanner documents in his 2017 book Our Bodies, Our Data, IQVIA (formerly IMS Health), along with other companies such as IBM and Lexis-Nexus, regularly pay health care providers, pharmacies, clinical labs, and insurers for patients’ de-identified health records, prescribing data, insurance claims, and other information. Then they collate and sell this information to pharmaceutical companies and others who rely on such data for research and marketing. And business is good: IQVIA reported revenue of $2.5 billion in the second quarter of this year.
Until now, the proceeds from the booming health data–brokering industry have seldom been seen by the people who contribute the information in the first place. But that could be about to change, thanks to a new...
A handful of such biobrokers have launched over the past few years, with an eye on the lucrative medical-data market, the growing popularity of consumer genomics—an industry that Research and Markets forecasts will be worth more than $900 million by 2023—and a surge in investor interest in applications of blockchain technology. The most established biobrokers are now beginning to launch limited versions of their platforms, with the goal of building up to trading in genomic sequences and detailed medical and behavioral information—as dictated by their users.
Patient control of data “is an inevitability in my view,” says Eric Topol, a physician and precision medicine researcher at the Scripps Research Institute whose Twitter manifesto on individual ownership of health data has been widely shared. While it’s not yet clear what technological form this empowerment will take, he says, such ownership “is where it’s headed—it’s just a matter of when.”
Changing the model
First deployed a decade ago as a way of securely recording transactions in bitcoin and other cryptocurrencies, blockchain technology is now used in traditional banking, contract agreements, and elsewhere. One of the technology’s distinctive features is its distributed storage of information, bypassing the need for a central hub or server and making records extremely difficult to modify or hack.
We really need to be paying them, rather than them paying us.—George Church, Harvard University & MIT
The technology is fundamental to the business model of many biobrokers, providing both an essentially fraud-proof record of each time personal data are accessed and a secure way to pay customers in return for sharing their information. “You can think about this as a database and an ecosystem where the data is controlled by the individuals, and through the power of different technologies, these individuals are able to be rewarded,” says Dawn Barry, the president and cofounder of California-based Luna DNA, a company that launched a year ago with the aim of creating such a database. To further increase security, Luna and similar startups would require academics and pharmaceutical companies to ask their research questions and run the numbers directly on proprietary platforms, she says, eliminating the need to download raw data locally. Individuals could opt to share their data for specific research projects and would be compensated in ownership shares in the company.
This is in stark contrast to existing options for customers interested in the scientific potential of their medical data. At 23andMe, the granddaddy of direct-to-consumer genetic testing, the Health + Ancestry package, which combs hundreds of thousands of SNPs for reportable information on everything from ancestry to Alzheimer’s risk, is on offer for $199. Users can opt to allow their information to be used in research, which enables 23andMe to sell access to the data in aggregated form—the proceeds from which customers never see. Ancestry.com and MyHeritage—both of which have suffered security breaches in recent years—operate similar programs.
The model has failed to encourage as many people to get involved as researchers might like. “For a while I thought that $1,000 would be a low enough price [for genome sequencing] that everybody would flock to it,” says George Church, a geneticist at Harvard University and MIT and a cofounder of blockchain company Nebula Genomics. “But as we get closer to that I realize that we really need to be paying them, rather than them paying us, in order to properly motivate, say, a billion people” to get sequenced.
Biobrokers expect that the monetary incentives that pharmaceutical companies, academic researchers, and others offer via their platforms would give more people a reason to get their genome sequenced and make them available. The data could be paired with information on phenotypes, lifestyle, and health outcomes. On some platforms, users could earn additional compensation for completing questionnaires or uploading data from fitness trackers. And pharmaceutical companies looking to recruit trial participants with a particular gene variant could easily identify them.
That type of customer engagement, as Luna’s Barry sees it, is central to moving the science along. “We have not been able to do the research we’ve wanted to do because we’ve lacked the scope and scale of data . . . and we haven’t had people engaged,” she tells The Scientist. “The only way to fix that problem . . . is to engage people as the owners, and ultimately the sources, of that data.”
It’s not just about money, though. Indeed, Barry says she doesn’t envision the platforms yielding huge monetary payouts for individuals. “I personally don’t like a lot of the narratives around ‘make money from your DNA.’” She expects that while payments are needed to ensure fairness and fully engage people, users will be motivated mainly by the opportunity to gain and contribute to new insights into human health.
Biobrokers may provide those insights to customers in a variety of ways. Users of Luna’s platform “will have their data on file and use it as a resource throughout their life, from planning a baby to making sure the baby has a healthy start to choosing medications that are best suited for their biology [to] understanding disease predisposition,” Barry says. In many cases, the platforms would also seek to help users make sense of their data. At Germany-based Shivom, which promises to help users collect monetary rewards for sharing data with researchers or participating in studies, the plan is to devise apps that will run on the platform and help what the company calls “genome donors” find personalized diet and exercise recommendations, and access health care providers via telemedicine.
In Church’s view, one industry that stands to benefit from customers’ access to these insights is the health insurance sector—even if companies never see individual data. Having their genomic information and sharing it with their doctors will help people make better health care decisions, he says. The cost savings could be dramatic if, for example, more people knew before conceiving a child whether they were carriers for a genetic disease. “For the carrier component alone, it’s probably worth fifty thousand dollars per person—that’s averaging the million-dollar consequences of the five percent of births [of babies with severe genetic diseases] over a large number of people.”
Many fledgling biobrokers are also developing analytical tools to eke more scientific value from patient data. Alongside blockchain, another enabling technology of many of the platforms is artificial intelligence (AI). “We’re hoping with the advanced AI, advanced analytics, we’re actually going to be able to discover novel insights,” such as new biomarkers for disease, says Natalie Pankova, Shivom’s chief operating officer.
Advancing AI was one of the inspirations for founding Longenesis, a partner of Nebula and a company that aims not to launch its own platform but to provide the technologies other firms need to do so, says Chief Science Officer Alex Zhavoronkov, who also serves as CEO of the AI-based company Insilico Medicine. “We realized that there is a lot of value embedded” in datasets used to train AI programs to see patterns in genomic and health data—value that should belong to individuals rather than to hospitals or pharmaceutical companies, he says. Zhavoronkov says AI will also be critical to ensuring data authenticity—for example, by spotting suspicious patterns that might indicate information on the platform doesn’t belong to the person who entered it. “That is a major challenge, how to make people remain anonymous and at the same time trust them.”
The Wild West
Any company offering insights into individuals’ genomes faces potential ethical quandaries about the information it provides, and those quandaries arguably become more complicated when money’s involved. For example, the prospect of a health insurance company sponsoring people to get their genomes sequenced with the expectation that they’ll avoid having a child with a genetic disease raises the specter of eugenics. Church says it’s important that people are educated in advance about what they might learn from genetic testing, and opt in or out of receiving certain kinds of information.
That said, the idea of selling access to our most personal information is not such a departure in an era in which we already implicitly “monetize our privacy in many ways”—for example, by effectively exchanging our browsing and search behaviors for access to “free” websites, notes Alta Charo, a bioethicist at the University of Wisconsin Law School in Madison. In contrast to such largely hidden exchanges, emerging blockchain-based platforms could provide people “potentially more opportunities to have very specific control over what’s given out and in what specific form.”
Indeed, biobrokering could represent not a potential ethical problem, but a solution, argues David Koepsell, cofounder and CEO of Florida-based biobroker EncrypGen. “The danger of people wanting to sell their data, and being incentivized by that, seems to me to be less of a problem than what’s going on now, where they’re giving it away without really realizing it, and somebody else is profiting by it,” he says. A philosopher and lawyer, Koepsell became interested a few years ago in issues of privacy and ownership in genomics, and concluded that blockchain could help provide a mechanism for individual control of personal information.
By itself, however, technology can’t deliver full individual ownership of medical data—not without legal backing. “There’s no unified mechanism or agreement on who gets to own the data and how they get to profit by it,” Koepsell notes. Even if blockchain-based platforms can safeguard the privacy of information users upload, in most countries there’s nothing to stop entities that somehow get hold of a person’s data outside the platforms from selling it. Potentially, they could even use one of the blockchain platforms to do so. “Without having complete control of the chain of custody of the sample, there’s really very little you can do.”
Koepsell suggests regulatory oversight will be needed to guard against such scenarios. But governing the genomic marketplace of the future could pose a challenge, Charo says, because blockchain’s decentralized nature means it’s “almost immunized against regulation.” A slew of blockchain-based startups are already eschewing initial public offerings—stock market launches that require disclosure of certain financial and business information—in favor of initial coin offerings (ICOs), which are conducted in cryptocurrency and require no such disclosures.
According to ICO listing site CoinSchedule, offerings have raised the equivalent of more than $18 billion so far this year across all sectors combined. That influx of coin has led to a “Wild West” situation for personal data trading, with many would-be genomic data–sharing platforms looking to get in on the action, says Zhavoronkov. But given the head start more-established biobrokers have—EncrypGen says it has about 1,000 users building profiles on its site so far, for example, while Luna is planning to roll out a bare-bones iteration of its platform this year—newcomers starting from scratch with an ICO don’t stand much of a chance, he says. “They don’t have a platform, they don’t have a system, they did not spend a few years piloting and testing, they are just fundraising and investing in PR without having done the work.”
The biobroker sector has seen “a lot of hype and overstatement,” agrees Koepsell. “People need to be aware of the difference between the claims and the reality in blockchain in general, but also in the genomic blockchain efforts that are going on.”
Correction (October 1): The original version of this article incorrectly stated that Luna DNA will compensate users in cryptocurrency. They will be compensated with shares of the company. The Scientist regrets the error.