Your Genetic Data Is The New Oil. These Startups Will Pay to Rent It.
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."
Time to visit your TikTok doc? The good and bad of doctors on social media
Rakhi Patel has carved a hobby out of reviewing pizza — her favorite food — on Instagram. In a nod to her preferred topping, she calls herself thepepperoniqueen. Photos and videos show her savoring slices from scores of pizzerias. In some of them, she’s wearing scrubs — her attire as an inpatient neurology physician associate at Tufts Medical Center in Boston.
“Depending on how you dress your pizza, it can be more nutritious,” said Patel, who suggests a thin crust, sugarless tomato sauce and vegetables galore as healthier alternatives. “There are no boundaries for a health care professional to enjoy pizza.”
Beyond that, “pizza fuels my mental health and makes me happy, especially when loaded with pepperoni,” she said. “If I’m going to be a pizza connoisseur, then I also need to take care of my physical health by ensuring that I get at least three days of exercise per week and eat nutritiously when I’m not eating pizza.”
She’s among an increasing number of health care professionals, including doctors and nurses, who maintain an active persona on social media, according to bioethics researchers. They share their hobbies and interests with people inside and outside the world of medicine, helping patients and the public become acquainted with the humans behind the scrubs or white coats. Other health care experts limit their posts to medical topics, while some opt for a combination of personal and professional commentaries. Depending on the posts, ethical issues may come into play.
“Health care professionals are quite prevalent on social media,” said Mercer Gary, a postdoctoral researcher at The Hastings Center, an independent bioethics research institute in Garrison, New York. “They’ve been posting on #medTwitter for many years, mainly to communicate with one another, but, of course, anyone can see the threads. Most recently, doctors and nurses have become a presence on TikTok.”
On social media, many health care providers perceive themselves to be “humanizing” their profession by coming across as more approachable — “reminding patients that providers are people and workers, as well as repositories of medical expertise,” Gary said. As a result, she noted that patients who are often intimidated by clinicians may feel comfortable enough to overcome barriers to scheduling health care appointments. The use of TikTok in particular may help doctors and nurses connect with younger followers.
When health care providers post on social media, they must bear in mind that they have legal and ethical duties to their patients, profession and society, said Elizabeth Levy, founder and director of Physicians for Justice.
While enduring three years of pandemic conditions, many health care professionals have struggled with burnout, exhaustion and moral distress. “Much health care provider content on social media seeks to expose the difficulties of the work,” Gary added. “TikTok and Instagram reels have shown health care providers crying after losing a patient or exhausted after a night shift in the emergency department.”
A study conducted in Beijing, China and published last year found that TikTok is the world’s most rapidly growing video application, amassing 1.6 billion users in 2021. “More and more patients are searching for information on genitourinary cancers via TikTok,” the study’s authors wrote in Frontiers in Oncology, referring to cancers of the urinary tracts and male reproductive organs. Among the 61 sample videos examined by the researchers, health care practitioners contributed the content in 29, or 47 percent, of them. Yet, 22 posts, 36 percent, were misinformative, mostly due to outdated information.
More than half of the videos offered good content on disease symptoms and examinations. The authors concluded that “most videos on genitourinary cancers on TikTok are of poor to medium quality and reliability. However, videos posted by media agencies enjoyed great public attention and interaction. Medical practitioners could improve the video quality by cooperating with media agencies and avoiding unexplained terminologies.”
When health care providers post on social media, they must bear in mind that they have legal and ethical duties to their patients, profession and society, said Elizabeth Levy, founder and director of Physicians for Justice in Irvine, Calif., a nonprofit network of volunteer physicians partnering with public interest lawyers to address the social determinants of health.
“Providers are also responsible for understanding the mechanics of their posts,” such as who can see these messages and how long they stay up, Levy said. As a starting point for figuring what’s acceptable, providers could look at social media guidelines put out by their professional associations. Even beyond that, though, they must exercise prudent judgment. “As social media continues to evolve, providers will also need to stay updated with the changing risks and benefits of participation.”
Patients often research their providers online, so finding them on social media can help inform about values and approaches to care, said M. Sara Rosenthal, a professor and founding director of the program for bioethics and chair of the hospital ethics committee at the University of Kentucky College of Medicine.
Health care providers’ posts on social media also could promote patient education. They can advance informed consent and help patients navigate the risks and benefits of various treatments or preventive options. However, providers could violate ethical principles if they espouse “harmful, risky or questionable therapies or medical advice that is contrary to clinical practice guidelines or accepted standards of care,” Rosenthal said.
Inappropriate self-disclosure also can affect a provider’s reputation, said Kelly Michelson, a professor of pediatrics and director of the Center for Bioethics and Medical Humanities at Northwestern University’s Feinberg School of Medicine. A clinician’s obligations to professionalism extend beyond those moments when they are directly taking care of their patients, she said. “Many experts recommend against clinicians ‘friending’ patients or the families on social media because it blurs the patient-clinician boundary.”
Meanwhile, clinicians need to adhere closely to confidentiality. In sharing a patient’s case online for educational purposes, safeguarding identity becomes paramount. Removing names and changing minor details is insufficient, Michelson said.
“The patient-clinician relationship is sacred, and it can only be effective if patients have 100 percent confidence that all that happens with their clinician is kept in the strictest of confidence,” she said, adding that health care providers also should avoid obtaining information about their patients from social media because it can lead to bias and risk jeopardizing objectivity.
Academic clinicians can use social media as a recruitment tool to expand the pool of research participants for their studies, Michelson said. Because the majority of clinical research is conducted at academic medical centers, large segments of the population are excluded. “This affects the quality of the data and knowledge we gain from research,” she said.
Don S. Dizon, a professor of medicine and surgery at the Warren Alpert Medical School of Brown University in Providence, Rhode Island, uses LinkedIn and Doximity, as well as Twitter, Instagram, TikTok, Facebook, and most recently, YouTube and Post. He’s on Twitter nearly every day, where he interacts with the oncology community and his medical colleagues.
Also, he said, “I really like Instagram. It’s where you will see a hybrid of who I am professionally and personally. I’ve become comfortable sharing both up to a limit, but where else can I combine my appreciation of clothes with my professional life?” On that site, he’s seen sporting shirts with polka dots or stripes and an occasional bow-tie. He also posts photos of his cats.
Don S. Dizon, a professor of medicine and surgery at Brown, started using TikTok several years ago, telling medical stories in short-form videos.
Don S. Dizon
Dizon started using TikTok several years ago, telling medical stories in short-form videos. He may talk about an inspirational patient, his views on end-of-life care and death, or memories of people who have passed. But he is careful not to divulge any details that would identify anyone.
Recently, some people have become his patients after viewing his content on social media or on the Internet in general, which he clearly states isn’t a forum for medical advice. “In both situations, they are so much more relaxed when we meet, because it’s as if they have a sense of who I am as a person,” Dizon said. “I think that has helped so much in talking through a cancer diagnosis and a treatment plan, and yes, even discussions about prognosis.”
He also posts about equity and diversity. “I have found myself more likely to repost or react to issues that are inherently political, including racism, homophobia, transphobia and lack-of-access issues, because medicine is not isolated from society, and I truly believe that medicine is a social justice issue,” said Dizon, who is vice chair of diversity, equity, inclusion and professional integrity at the SWOG Cancer Research Network.
Through it all, Dizon likes “to break through the notion of doctor as infallible and all-knowing, the doctor as deity,” he said. “Humanizing what I do, especially in oncology, is something that challenges me on social media, and I appreciate the opportunities to do it on TikTok.”
Could this habit related to eating slow down rates of aging?
Last Thursday, scientists at Columbia University published a new study finding that cutting down on calories could lead to longer, healthier lives. In the phase 2 trial, 220 healthy people without obesity dropped their calories significantly and, at least according to one test, their rate of biological aging slowed by 2 to 3 percent in over a couple of years. Small though that may seem, the researchers estimate that it would translate into a decline of about 10 percent in the risk of death as people get older. That's basically the same as quitting smoking.
Previous research has shown that restricting calories results in longer lives for mice, worms and flies. This research is unique because it applies those findings to people. It was published in Nature Aging.
But what did the researchers actually show? Why did two other tests indicate that the biological age of the research participants didn't budge? Does the new paper point to anything people should be doing for more years of healthy living? Spoiler alert: Maybe, but don't try anything before talking with a medical expert about it. I had the chance to chat with someone with inside knowledge of the research -- Dr. Evan Hadley, director of the National Institute of Aging's Division of Geriatrics and Clinical Gerontology, which funded the study. Dr. Hadley describes how the research participants went about reducing their calories, as well as the risks and benefits involved. He also explains the "aging clock" used to measure the benefits.
Evan Hadley, Director of the Division of Geriatrics and Clinical Gerontology at the National Institute of Aging
NIA