Your Genetic Data Is The New Oil. These Startups Will Pay to Rent It.
A doctor conducts a test on DNA.
Perhaps you're one of the 12 million people who has spit into a tube in recent years to learn the secrets in your genetic code, like your ancestry, your health risks, or your carrier status for certain diseases. If you haven't participated in direct-to-consumer genetic testing, you may know someone who has.
It's for people who want more control over their genetic data--plus a share of the proceeds when and if that data is used.
Mountains of genomic data have been piling up steeply over the last several years, but according to some experts, not enough research and drug discovery is being done with the data collected, and customers rarely have a say in how their data is used. Now, a slew of ambitious startup companies are bringing together the best of blockchain technology and human genomics to help solve these problems.
But First, Why Is Your Genome So Valuable?
Access to genetic information is an obvious boon to scientific and medical progress. In the right hands, it has the potential to save lives and reduce suffering — by facilitating the development of better, safer, more targeted treatments and by shedding light on the role of genetics in countless diseases and medical conditions.
Research requiring access to direct-to-consumer (DTC) genomic data is already well underway. For example, 23andMe, the popular California-based DTC genetic testing company, has published 107 research articles so far, as of this May, using data from their five million-plus customers around the world. Their website states that, on average, of the 80 percent of their customers who have opted to share their genomic data for research purposes, each "individual contributes to 200 different research studies."
And this July, a new collaboration was announced between 23andMe and GlaxoSmithKline, the London-based pharmaceutical company. GlaxoSmithKline will be using data from 23andMe customers to develop new medical treatments, while 23andMe will receive $300 million from the four-year deal. Both companies are poised to profit significantly from their union.
Should 23andMe's customers share in the gains? Peter Pitts, president of the Center for Medicine in the Public Interest, believes they should. "Are they going to offer rebates to people who opt in, so their customers aren't paying for the privilege of 23andMe working with a for-profit company in a for-profit research project?" Pitts told NBC. So far, 23andMe has not announced any plans to share profits with their customers.
But outside of such major partnerships, many researchers are frustrated by the missed opportunities to dig deeper into the correlations between genetics and disease. That's because people's de-identified genomic information is "essentially lying fallow," siloed behind significant security blockades in the interest of preserving their anonymity. So how can both researchers and consumers come out ahead?
Putting Consumers Back in Control
For people who want more control over their genetic data -- plus a share of the proceeds when and if that data is used -- a few companies have paired consumer genomics with blockchain technology to form a new field called "blockchain genomics." Blockchain is a data storage technology that relies on a network of computers, or peer-to-peer setup, making it incredibly difficult to hack. "It's a closed loop of transactions that gets protected and encrypted, and it cannot be changed," says Tanya Woods, a blockchain thought leader and founder of Kind Village, a social impact technology platform.
The vision is to incentivize consumers to share their genomic data and empower researchers to make new breakthroughs.
"So if I agree to give you something and you agree to accept it, we make that exchange, and then that basic framework is captured in a block. … Anything that can be exchanged can be ledgered on blockchain. Anything. It could be real estate, it could be the transfer of artwork, it could be the purchase of a song or any digital content, it could be recognition of a certification," and so on.
The blockchain genomics companies' vision is to incentivize consumers to share their genomic data and empower researchers to make new breakthroughs, all while keeping the data secure and the identities of consumers anonymous.
Consumers, or "partners" as these companies call them, will have a direct say regarding which individuals or organizations can "rent" their data, and will be able to negotiate the amount they receive in exchange. But instead of fiat currency (aka "regular money") as payment, partners will either be remunerated in cryptocurrency unique to the specific company or they will be provided with individual shares of ownership in the database for contributing DNA data and other medical information.
Luna DNA, one of the blockchain genomics companies, "will allow any credible researcher or non-profit to access the databases for a nominal fee," says its president and co-founder, Dawn Barry. Luna DNA's infrastructure was designed to embrace certain conceptions of privacy and privacy law "in which individuals are in total control of their data, including the ability to have their data be 'forgotten' at any time," she said. This is nearly impossible to implement in pre-existing systems that were not designed with full control by the individual in mind.
One of the legal instruments to which Barry referred was the European Union's General Data Protection Regulation, which "states that the data collected on an individual is owned and should be controlled by that individual," she explained. Another is the California Privacy Act that echoes similar principles. "There is a global trend towards more control by the individual that has very deep implications to companies and sites that collect and aggregate data."
David Koepsell, CEO and co-founder of EncrypGen, told Forbes that "Most people are not aware that your DNA contains information about your life expectancy, your proclivity to depression or schizophrenia, your complete ethnic ancestry, your expected intelligence, maybe even your political inclinations" — information that could be misused by insurance companies and employers. And though DTC customers have been assured that their data will stay anonymous, some data can be linked back to consumers' identities. Blockchain may be the answer to these concerns.
Both blockchain technology and the DTC genetic testing arena have a glaring diversity problem.
"The security that's provided by blockchain is tremendous," Woods says. "It's a significant improvement … and as we move toward more digitized economies around the world, these kinds of solutions that are providing security, validity, trust — they're very important."
In the case of blockchain genomics companies like EncrypGen, Luna DNA, Longenesis, and Zenome, each partner who joins would bring a digital copy of their genetic readout from DTC testing companies (like 23andMe or AncestryDNA). The blockchain technology would then be used to record how and for what purposes researchers interact with it. (To learn more about blockchain, check out this helpful visual guide by Reuters.)
Obstacles in the Path to Success
The cryptocurrency approach as a method of payment could be an unattractive lure to consumers if only a limited number of people make transactions in a given currency's network. And the decade-old technology underlying it -- blockchain -- is not yet widely supported, or even well-understood, by the public at large.
"People conflate blockchain with cryptocurrency and bitcoin and all of the concerns and uncertainty thereof," Barry told us. "One can think of cryptocurrency as a single expression of the vast possibilities of the blockchain technology. Blockchain is straightforward in concept and arcane in its implementation."
But blockchain, with its Gini coefficient of 0.98, is one of the most unequal "playing fields" around. The Gini coefficient is a measure of economic inequality, where 0 represents perfect equality and 1 represents perfect inequality. Around 90 percent of bitcoin users, for example, are male, white or Asian, between the ages of 18 and 34, straight, and from middle and upper class families.
The DTC genetic testing arena, too, has a glaring diversity problem. Most DTC genetic test consumers, just like most genetic study participants, are of European descent. In the case of genetic studies, this disparity is largely explained by the fact that most research is done in Europe and North America. In addition to being over 85 percent white, individuals who purchase DTC genetic testing kits are highly educated (about half have more than a college degree), well off (43 percent have a household income of $100,000 or more per year), and are politically liberal (almost 65 percent). Only 14.5 percent of DTC genetic test consumers are non-white, and a mere 5 percent are Hispanic.
Since risk of genetic diseases often varies greatly between ethnic groups, results from DTC tests can be less accurate and less specific for those of non-European ancestry — simply due to a lack of diverse data. The bigger the genetic database, wrote Sarah Zhang for The Atlantic, the more insights 23andMe and other DTC companies "can glean from DNA. That, in turn, means the more [they] can tell customers about their ancestry and health…" Though efforts at recruiting non-white participants have been ongoing, and some successes have been made at improving ancestry tools for people of color, the benefits of genomic gathering in North America are still largely reaped by Caucasians.
So far, it's not yet clear who or how many people will choose to partake in the offerings of blockchain genomics companies.
So one chief hurdle for the blockchain genomics companies is getting the technology into the hands of those who are under-represented in both blockchain and genetic testing research. Women, in particular, may be difficult to bring on board the blockchain genomics bandwagon — though not from lack of interest. Although women make up a significant portion of DTC genetic testing customers (between 50 and 60 percent), their presence is lacking in blockchain and the biotech industry in general.
At the North American Bitcoin Conference in Miami earlier this year, only three women were on stage, compared to 84 men. And the after-party was held in a strip club.
"I was at that conference," Woods told us. "I don't know what happened at the strip club, I didn't observe it. That's not to say it didn't happen … but I enjoyed being at the conference and I enjoyed learning from people who are experimenting in the space and developing in it. Generally, would I have loved to see more women visible? Of course. In tech generally I want to see more women visible, but there's a whole ecosystem shifting that has to happen to make that possible."
Luna's goal is to achieve equal access to a technology (blockchain genomics) that could potentially improve health and quality of life for all involved. But in the merging of two fields that have been unequal since their inception, achieving equal access is one tall order indeed. So far, it's not yet clear who or how many people will choose to participate. LunaDNA's platform has not yet launched; EncrypGen released their beta version just last month.
Sharon Terry, president and CEO of Genetic Alliance — a nonprofit organization that advocates for access to quality genetic services — recently shared a message that reflects the zeitgeist for all those entering the blockchain genomics space: "Be authentic. Tell the truth, even about motives and profits. Be transparent. Engage us. Don't leave us out. Make this real collaboration. Be bold. Take risks. People are dying. It's time to march forward and make a difference."
A company uses AI to fight muscle loss and unhealthy aging
In December 2022, a company called BioAge Labs published findings on a drug that worked to prevent muscular atrophy, or the loss of muscle strength and mass, in older people.
There’s a growing need to slow down the aging process. The world’s population is getting older and, according to one estimate, 80 million Americans will be 65 or older by 2040. As we age, the risk of many chronic diseases goes up, from cancer to heart disease to Alzheimer’s.
BioAge Labs, a company based in California, is using genetic data to help people stay healthy for longer. CEO Kristen Fortney was inspired by the genetics of people who live long lives and resist many age-related diseases. In 2015, she started BioAge to study them and develop drug therapies based on the company’s learnings.
The team works with special biobanks that have been collecting blood samples and health data from individuals for up to 45 years. Using artificial intelligence, BioAge is able to find the distinctive molecular features that distinguish those who have healthy longevity from those who don’t.
In December 2022, BioAge published findings on a drug that worked to prevent muscular atrophy, or the loss of muscle strength and mass, in older people. Much of the research on aging has been in worms and mice, but BioAge is focused on human data, Fortney says. “This boosts our chances of developing drugs that will be safe and effective in human patients.”
How it works
With assistance from AI, BioAge measures more than 100,000 molecules in each blood sample, looking at proteins, RNA and metabolites, or small molecules that are produced through chemical processes. The company uses many techniques to identify these molecules, some of which convert the molecules into charged atoms and then separating them according to their weight and charge. The resulting data is very complex, with many thousands of data points from patients being followed over the decades.
BioAge validates its targets by examining whether a pathway going awry is actually linked to the development of diseases, based on the company’s analysis of biobank health records and blood samples. The team uses AI and machine learning to identify these pathways, and the key proteins in the unhealthy pathways become their main drug targets. “The approach taken by BioAge is an excellent example of how we can harness the power of big data and advances in AI technology to identify new drugs and therapeutic targets,” says Lorna Harries, a professor of molecular genetics at the University of Exeter Medical School.
Martin Borch Jensen is the founder of Gordian Biotechnology, a company focused on using gene therapy to treat aging. He says BioAge’s use of AI allows them to speed up the process of finding promising drug candidates. However, it remains a challenge to separate pathologies from aspects of the natural aging process that aren’t necessarily bad. “Some of the changes are likely protective responses to things going wrong,” Jensen says. “Their data doesn’t…distinguish that so they’ll need to validate and be clever.”
Developing a drug for muscle loss
BioAge decided to focus on muscular atrophy because it affects many elderly people, making it difficult to perform everyday activities and increasing the risk of falls. Using the biobank samples, the team modeled different pathways that looked like they could improve muscle health. They found that people who had faster walking speeds, better grip strength and lived longer had higher levels of a protein called apelin.
Apelin is a peptide, or a small protein, that circulates in the blood. It is involved in the process by which exercise increases and preserves muscle mass. BioAge wondered if they could prevent muscular atrophy by increasing the amount of signaling in the apelin pathway. Instead of the long process of designing a drug, they decided to repurpose an existing drug made by another biotech company. This company, called Amgen, had explored the drug as a way to treat heart failure. It didn’t end up working for that purpose, but BioAge took note that the drug did seem to activate the apelin pathway.
BioAge tested its new, repurposed drug, BGE-105, and, in a phase 1 clinical trial, it protected subjects from getting muscular atrophy compared to a placebo group that didn’t receive the drug. Healthy volunteers over age 65 received infusions of the drug during 10 days spent in bed, as if they were on bed rest while recovering from an illness or injury; the elderly are especially vulnerable to muscle loss in this situation. The 11 people taking BGE-105 showed a 100 percent improvement in thigh circumference compared to 10 people taking the placebo. Ultrasound observations also revealed that the group taking the durg had enhanced muscle quality and a 73 percent increase in muscle thickness. One volunteer taking BGE-105 did have muscle loss compared to the the placebo group.
Heather Whitson, the director of the Duke University Centre for the study of aging and human development, says that, overall, the results are encouraging. “The clinical findings so far support the premise that AI can help us sort through enormous amounts of data and identify the most promising points for beneficial interventions.”
More studies are needed to find out which patients benefit the most and whether there are side effects. “I think further studies will answer more questions,” Whitson says, noting that BGE-105 was designed to enhance only one aspect of physiology associated with exercise, muscle strength. But exercise itself has many other benefits on mood, sleep, bones and glucose metabolism. “We don’t know whether BGE-105 will impact these other outcomes,” she says.
The future
BioAge is planning phase 2 trials for muscular atrophy in patients with obesity and those who have been hospitalized in an intensive care unit. Using the data from biobanks, they’ve also developed another drug, BGE-100, to treat chronic inflammation in the brain, a condition that can worsen with age and contributes to neurodegenerative diseases. The team is currently testing the drug in animals to assess its effects and find the right dose.
BioAge envisions that its drugs will have broader implications for health than treating any one specific disease. “Ultimately, we hope to pioneer a paradigm shift in healthcare, from treatment to prevention, by targeting the root causes of aging itself,” Fortney says. “We foresee a future where healthy longevity is within reach for all.”
How old fishing nets turn into chairs, car mats and Prada bags
A company called Aquafil is turning the fibers from fishing nets and old carpets into new threads for chairs, car mats, bikinis and Prada bags.
Discarded nylon fishing nets in the oceans are among the most harmful forms of plastic pollution. Every year, about 640,000 tons of fishing gear are left in our oceans and other water bodies to turn into death traps for marine life. London-based non-profit World Animal Protection estimates that entanglement in this “ghost gear” kills at least 136,000 seals, sea lions and large whales every year. Experts are challenged to estimate how many birds, turtles, fish and other species meet the same fate because the numbers are so high.
Since 2009, Giulio Bonazzi, the son of a small textile producer in northern Italy, has been working on a solution: an efficient recycling process for nylon. As CEO and chairman of a company called Aquafil, Bonazzi is turning the fibers from fishing nets – and old carpets – into new threads for car mats, Adidas bikinis, environmentally friendly carpets and Prada bags.
For Bonazzi, shifting to recycled nylon was a question of survival for the family business. His parents founded a textile company in 1959 in a garage in Verona, Italy. Fifteen years later, they started Aquafil to produce nylon for making raincoats, an enterprise that led to factories on three continents. But before the turn of the century, cheap products from Asia flooded the market and destroyed Europe’s textile production. When Bonazzi had finished his business studies and prepared to take over the family company, he wondered how he could produce nylon, which is usually produced from petrochemicals, in a way that was both successful and ecologically sustainable.
The question led him on an intellectual journey as he read influential books by activists such as world-renowned marine biologist Sylvia Earle and got to know Michael Braungart, who helped develop the Cradle-to-Cradle ethos of a circular economy. But the challenges of applying these ideologies to his family business were steep. Although fishing nets have become a mainstay of environmental fashion ads—and giants like Dupont and BASF have made breakthroughs in recycling nylon—no one had been able to scale up these efforts.
For ten years, Bonazzi tinkered with ideas for a proprietary recycling process. “It’s incredibly difficult because these products are not made to be recycled,” Bonazzi says. One complication is the variety of materials used in older carpets. “They are made to be beautiful, to last, to be useful. We vastly underestimated the difficulty when we started.”
Soon it became clear to Bonazzi that he needed to change the entire production process. He found a way to disintegrate old fibers with heat and pull new strings from the discarded fishing nets and carpets. In 2022, his company Aquafil produced more than 45,000 tons of Econyl, which is 100% recycled nylon, from discarded waste.
More than half of Aquafil’s recyclate is from used goods. According to the company, the recycling saves 90 percent of the CO2 emissions compared to the production of conventional nylon. That amounts to saving 57,100 tons of CO2 equivalents for every 10,000 tons of Econyl produced.
Bonazzi collects fishing nets from all over the world, including Norway and Chile—which have the world’s largest salmon productions—in addition to the Mediterranean, Turkey, India, Japan, Thailand, the Philippines, Pakistan, and New Zealand. He counts the government leadership of Seychelles as his most recent client; the island has prohibited ships from throwing away their fishing nets, creating the demand for a reliable recycler. With nearly 3,000 employees, Aquafil operates almost 40 collection and production sites in a dozen countries, including four collection sites for old carpets in the U.S., located in California and Arizona.
First, the dirty nets are gathered, washed and dried. Bonazzi explains that nets often have been treated with antifouling agents such as copper oxide. “We recycle the coating separately,” he says via Zoom from his home near Verona. “Copper oxide is a useful substance, why throw it away?”
Still, only a small percentage of Aquafil’s products are made from nets fished out of the ocean, so your new bikini may not have saved a strangled baby dolphin. “Generally, nylon recycling is a good idea,” says Christian Schiller, the CEO of Cirplus, the largest global marketplace for recyclates and plastic waste. “But contrary to what consumers think, people rarely go out to the ocean to collect ghost nets. Most are old, discarded nets collected on land. There’s nothing wrong with this, but I find it a tad misleading to label the final products as made from ‘ocean plastic,’ prompting consumers to think they’re helping to clean the oceans by buying these products.”
Aquafil gets most of its nets from aqua farms. Surprisingly, one of Aquafil’s biggest problems is finding enough waste. “I know, it’s hard to believe because waste is everywhere,” Bonazzi says. “But we need to find it in reliable quantity and quality.” He has invested millions in establishing reliable logistics to source the fishing nets. Then the nets get shredded into granules that can be turned into car mats for the new Hyundai Ioniq 5 or a Gucci swimsuit.
The process works similarly with carpets. In the U.S. alone, 3.5 billion pounds of carpet are discarded in landfills every year, and less than 3 percent are currently recycled. Aquafil has built a recycling plant in Phoenix to help divert 12,500 tons of carpets from the landfill every year. The carpets are shredded and deconstructed into three components: fillers such as calcium carbonate will be reused in the cement industry, synthetic fibers like polypropylene can be used for engineering plastics, and nylon. Only the pelletized nylon gets shipped back to Europe for the production of Econyl. “We ship only what’s necessary,” Bonazzi says. Nearly 50 percent of his nylon in Italy and Slovenia is produced from recyclate, and he hopes to increase the percentage to two-thirds in the next two years.
His clients include Interface, the leading world pioneer for sustainable flooring, and many other carpet producers plus more than 2500 fashion labels, including Gucci, Prada, Patagonia, Louis Vuitton, Adidas and Stella McCartney. “Stella McCartney just introduced a parka that’s made 100 percent from Econyl,” Bonazzi says. “We’re also in a lot of sportswear because Nylon is a good fabric for swimwear and for yoga clothes.” Next, he’s looking into sunglasses and chairs made with Econyl - for instance, the flexible ergonomic noho chair, designed by New Zealand company Formway.
“When I look at a landfill, I see a gold mine," Bonazzi says.
“Bonazzi decided many years ago to invest in the production of recycled nylon though industry giants halted similar plans after losing large investments,” says Anika Herrmann, vice president of the German Greentech-competitor Camm Solutions, which creates bio-based polymers from cane sugar and other ag waste. “We need role models like Bonazzi who create sustainable solutions with courage and a pioneering spirit. Like Aquafil, we count on strategic partnerships to enable fast upscaling along the entire production chain.”
Bonazzi’s recycled nylon is still five to 10 percent more expensive than conventionally produced material. However, brands are increasingly bending to the pressure of eco-conscious consumers who demand sustainable fashion. What helped Bonazzi was the recent rise of oil prices and the pressure on industries to reduce their carbon footprint. Now Bonazzi says, “When I look at a landfill, I see a gold mine.”
Ideally, the manufacturers take the products back when the client is done with it, and because the nylon can theoretically be reused nearly infinitely, the chair or bikini could be made into another chair or bikini. “But honestly,” Bonazzi half-jokes, “if someone returns a McCartney parka to me, I’ll just resell it because it’s so expensive.”
The next step: Bonazzi wants to reshape the entire nylon industry by pivoting from post-consumer nylon to plant-based nylon. In 2017, he began producing “nylon-6,” together with Genomatica in San Diego. The process uses sugar instead of petroleum. “The idea is to make the very same molecule from sugar, not from oil,” he says. The demonstration plant in Ljubljana, Slovenia, has already produced several hundred tons of nylon, and Genomatica is collaborating with Lululemon to produce plant-based yoga wear.
Bonazzi acknowledges that his company needs a few more years before the technology is ready to meet his ultimate goal, producing only recyclable products with no petrochemicals, low emissions and zero waste on an industrial scale. “Recycling is not enough,” he says. “You also need to produce the primary material in a sustainable way, with a low carbon footprint.”