Gift Cards for Your DNA Data

Believe it or not, when you go to the doctor, the data from that doctor's visit is often sold to companies that have nothing to do with treating any illness. Electronic records companies, labs, pharmacies, insurers. They're all selling intimate data about you. It's not only big data, but big business. Welcome to Prognosis, bloom Brigs podcast about the intersection of health and technology and the unexpected places it's taking us. I'm your host, Michelle fay Cortes. This week, we're looking

at a new kind of healthcare data broker. These companies don't just want to sell your data. They're also willing to pay you for it. But that's not really the point. Stay with us and we'll tell you what these companies are really after. Here's Bloomberg's health reporter Kristen B. Brown with the story. Okay, So I'm going to log into my Nebula account and see more opportunities there are for

me to make some money off my DNA. That's the sound of me hunched over my laptop on a rainy Oakland afternoon, signing up to give my personal healthcare data away, or rather I'm signing up to sell it. Okay. So I'm going to take some surveys. Okay, So they want to know approximately how often do you drink alcohol? M daily? Are almost daily? Once twice a week, probably three or four times for a week. Uh, how many glasses of

red wine do you drink? True white wine? I'm answering surveys about my health on the website of a company named Nebula Genomics. Nebula is one among a new breed of health data brokers. Like more traditional health data brokers, the company wants to profit off your data, in this case by selling it to researchers, but it wants you to profit off your data too. Nebula launched last fall

with a lot of buzz. It was spun out of the lab of George Church, the Harvard geneticist as famous for his work as he is throwing wild ideas out there, like trying to resurrect the Wooly Mammoth Church, and many others in the scientific community believe that the more people share their genetic data, the sooner we will have treatments

and cures for devastating diseases. This is oversimplifying it a bit, but the basic idea is that researchers could mine the genomes of people who share the same conditions and look for clues to treating those conditions, identifying the common bits of their genetic code that could be linked to disease. But if you want people to share their data, the company reasons, you have to give them something for it. This is a strategy long deployed among tech companies like

Facebook and Google. You give Facebook all that data, and Facebook gives you access to Facebook. Nebula instead gives people access to freehold genome sequencing. Eventually, it also plans to offer other kinds of perks, like gift cards and money for sharing your data. I caught up with Kamalabad, the twenty four year old CEO of Nebula in San Francisco. Our goal is, you know, can we build this essentially a community of stakeholders that are willingly and transparently sharing

their genomic data. You know, the main interest or main goal of nebulas to build data sets that enable scientists to do interesting things right, whether it's rational drug design, whether it's developing new use cases for precision medicine or pharmaca genomics. All this relies on large scale data sets that we don't really have access to today. In the genomics world, Companies like twenty three and Me have figured out that people will actually pay them to give away

their health data. Consumers shell out as much as a hundred ninety nine bucks for twenty three and ME DNA test, and twenty three and Me can turn around and sell access to that information to pharmaceutical companies. Last year, and Me into three hundred million dollar deal with Glaxo Smith Klein to do just that. But Kamal says that's the wrong approach. We think a pretty big flaw on the

existing model is that it's it's very transactional. Right. You kind of swipe your credit card, you get one of those spit kits, you spit in it, you send it back, you get your report, and you say, you know, great, that's it. Um what we want to incentivize people to do is come back over time, learn more about themselves, and share more information. That way, we can build a

longitudinal view of somebody's health. Nebula wants to track your health over time to keep users coming back so that researchers can get a more complete picture of it a better data set. My own longitudinal health journey started with surveys, lots of surveys. I took a survey about cancer. Have I ever been diagnosed with cancer? No? And what about my diet? How many tables means have cooked vegetables do I eat first today? Table spoons? And my exercise habits?

How many days you walk for at least ten minutes in a simple whole week. I like every day I walked from the bar ten minutes. I gave no feel information about my drinking habits and my medical history. I also uploaded my twenty train MEE data, which gives the company access to really intimate information about me, like whether

I'm at risk for Alzheimer's or diabetes. At the end of all this, I had earned six hundred and fifty credits of the one thousand credits you need to get a free low grade whole genome sequencing instead of going through all this. By the way, you can also just buy the sequencing from Nebula for a hundred bucks. Recently, the company also launched a subscription service, which gives you access to things like new research about your genome and

priority to participate in research studies. Another pitch the company makes is that if a researcher finds your information interesting, they might pay for a clinical grade sequencing and share that data with you. Comal told me that eventually there will also be opportunities to improve your own health by participating in research studies that, for example, give part have

spens wearables to track things like heart rate. But as I was filling out all those surveys, I got the distinct feeling that I probably wasn't all that interesting to researchers. I exercise, I eat pretty well most of the time, and my family has no history of inherited disease other than really bad eyesight and pretty average health wise. Usually people's data is only valuable and aggregate when combined with data from millions of other people. Health data brokers are

nothing new. They've actually been around since the nineteen fifties, but computers and then the Internet turned health data brokerage into a multibillion dollar business. Here's how it works. Companies collect de identified data from millions and millions of people, often paying pennies per record your blood test results, hospital records,

prescription information. It all gets stripped of your name and sold by data broker middleman like a c A pharmaceutical company can buy access to your records to better sell you drugs, even as it might be difficult for you to get a copy of your own health care records from your doctor. And the practice, by the way, is totally legal under hip hop, the law that's been on the book since nine to protect patient privacy. I talked

to Adam Tanner, who wrote a book about this. He was on a cruise ship off the coats of Vietnam when we talked. You go to the doctor's office, You close the door. You expect only the doctor will know what I'm telling about my health condition. But the doctor is often recording onto a computer the details of the of the patient's condition, and that's good to keep records

on what patients are about. Many of those systems, however, those computer systems that connect doctors with hospitals and pharmacies and so on. Many of them sell anonymized data about patients, so it doesn't have your name in it, but it says, here is a woman this age, living in this part of town, and it joins records about you then with other previous records about you. Adam told me that this

business really took off when records became digital. And digitization of medicine is a good thing in general because it keeps detailed records about you, but it has allowed this side business to establish itself in the shadows that most patients do not see, do not have a say in uh, and indeed many health professionals don't know about this. Data mostly gets used for marketing, and some of it can be pretty intimate or embarrassing, even though it's stripped of

your name. These medical data dossiers usually include gender, age, and partial zip codes. Studies have shown that it's not always that hard to identify people based on it. One should be concerned because health information is often our most intimate information. You could be discriminated against the work, You could be discriminated against socially. Once this kind of information

is out there in the ether, you can't put it back. Forever, and just knowing this basic information could be damaging to you, and it could be something relatively trivial. Adam makes a good point here in his book, he talks about how the actor Charlie Sheen wound up paying millions in bribes to keep his own HIV diagnosis private. For those of us that aren't famous, there is risk to life insurers, for example, if they access this data, would legally be

allowed to discriminate against you based on it. But Adam told me he could also imagine some less obvious ways this data could be incriminating. I remember attending just a few years ago a lecture at the university and the woman was showing some videos on the internet, uh to demonstrate a point in her lecture, and off to the side of a YouTube video she was showing there was advertisement, are you depressed? We have the answer to your mental

health issues. Um. Now, it could be a coincidence that those ads were served, but I can't erase from my mind the image that this is a person that may have had that issue. At a time when Facebook and Amazon and Google have woken people up to the value of their data, this new crop of companies that want to pay you for your data, are exploiting frustration with this model. Here's comal again the way the process exists today, no one is really winning except for these these intermediary

data brokers. So I think this idea of let's let's empower patients to aggregate, curate, and share their their health data is something that's becoming more common and more mainstream. This is language you hear a lot in this world. The websites for these companies are filled with trust inspiring words like transparency and privacy. They promised control and ownership over your data. They also suggest that your data will

be put to better use. The data bought and sold by traditional healthcare data brokers is often riddled with errors and without some serious looting, The people using I have no way of following up with the people the data come from if they want to ask follow up questions. It also hasn't really delivered the scientific or medical benefits that it could. Like I mentioned earlier, it mainly gets used for commercial purposes. But I wondered if giving your

data away can ever really be an empowering move. Another company I gave my data to Luna DNA actually got permission from the Securities and Exchange Commission to give users shares of the company in exchange for data. Luna's pitch made me think of Facebook again and how surprised Facebook users were when they realized exactly how their data was being used, how they were paying for using the site.

Luna CEO Bob Kane told me that giving people an ownership stake helps them trust that their data isn't being misused. Our data is very much ours. It's as unique as anything can get to defining us, and so it's one of those rights that nobody can take away from us. Una has set up a complicated corporate structure in order to make this happen. The database itself is actually a subsidiary of Luna, and that is what people get shares of.

Since soft launching earlier this year, the company has been busy building partnerships with groups like Rare Disease Foundations, hoping patients with those diseases will contribute data and eventually lead to treatments. And when the database turns a profit by say, selling information to researchers, everyone gets a cut. Yes, so

those shares are yours. They're non transferable because we don't think you can transfer the right to control your data, and they really represent your data in this system, and you're consenting for your data to be used at a population level to help researchers answer sort of higher level questions about links between your genome and your health or social determinants of health. How they're used is when we sign up with a commercial company, for instance of pharma,

and they pay us to access to database. The proceeds will be shared with the community based on your ownership. I signed up for a Luna DNA account. I answered a few surveys about my health and shared my twenty three and me data. For that, I got fifty four shares. According to Luna's filing with SEC. Each of those shares are currently worth about seven cents. Based on those numbers,

your whole genome would be worth one dollars. There are constantly new companies like Luna and Nebula popping up, and I shared my data with a bunch of them. I really wanted to get a sense of the entire landscape, to see what you can get when you give your own data away. Doc do AI gives people Amazon gift

cards for sharing data and participating in trials. I didn't get anything for uploading my genome, and one of the trials I enrolled in a waitlist for would only earn me thirty of the one thousand points I would need to get a ten dollar Amazon gift card. Another company, in Blima, charges people to securely store their records on the blockchain, but you can also earn cryptocurrency for sharing

your data. Yet another, Humanity dot co, pitches itself as a go between brokering data for its users and helping them get it cut. On the company's app and YouTube channel, there were all these testimonials from people proclaiming that ownership of data is a human right. I want to own. I want to own my data. I want to earn my data as my property because right now it is quite unclear. But Humanity, like the other companies, is also pretty early stage. There wasn't much I could do besides

pledge my enthusiasm for the idea. My little data brokering experiment was starting to feel less like a mission of self empowerment and more like a waste of time. I talked with George Contreris, a law professor at the University of Utah who thinks a lot about these things. He

was also skeptical. I mean the cynical view is that these companies are cropping up so that they can monetize the data, right, I mean, not not so that patients can profit from the use of their health data, so that these companies can become intermediaries and take a slice of every data transaction that comes along. All of the companies I talked to told me that people really shouldn't

be in it for the rewards anyway. It's about helping the progress of science and medicine, and they want to do it more transparently and in doing so also collect higher quality data. But it's not the collecting health data doesn't have legitimate justifications. George said, there's a doctor's office and twenty people show up with the same strange flu symptoms. We we want that doctor's office to report that to the c DC, and we want them to figure out

what's going on and then to develop a vaccine. There are a million contexts where it's important for health care providers to be able to provide data. His issue was more that this new breed of data brokers could actually wind up making things more complicated by starting to treat data like legal property. If your data is legal property.

All of a sudden, there are all these new issues, like asking permission every time someone wants to use it and figuring out things like who controls your data when you die. If you are in a situation where the centers for disease control, or hospitals or pharmaceutical companies vaccine companies needed to figure out how to pay somebody every time they wanted to use some data, you know the system. The system would a become much less efficient and fee

would be come much more expensive. Both of those are not good for public health, George said. Ironically, in this new model, people might wind up giving away even more information and having fewer protections for it. They're better protected under the current system with HIPPA than they are with these data brokers, who you know, are pretty uncontrolled, unregulated, and you know you you basically just have to trust them, although they're you know, they're really just profit oriented startups

at this point. Um so I would honestly rather trust my hospital than than one of these data brokers to use my data properly. I talked with a few other

experts in the space though that disagreed with George. Adam, the guy who wrote the Health Data Book, and Eric Topol, a geneticist who has written a lot about patient access to data, both told me they were actually optimistic, so long as these companies are transparent and give people choices and how their data is used, the point of collecting all this data, after all, to help advance science and medicine, and to find cures for devastating diseases and understand more

about how the human body works. It's hard to argue with that. But in reporting this story, I couldn't help think about another story, the now famous story of Henrietta Lacks. Henriette A. Lacks was a black woman who died of cancer in the South in the nineteen fifties after getting pretty lacking medical treatment, But doctors harvested her cells, which turned out to have some special characteristics. They didn't die. The HeLa cells proved invaluable to medical research, and with

their help, many companies got rich. Well. Henrietta's family, at times barely got by. What if the genome you were paid twenty one for winds up leading to a billion dollar cure. Most of us have pretty average datum, but some of us don't. It was one thirty two year old aerobics instructor in the Dallas suburbs that led researchers to a mutation in the gene pc s K nine that seems to low or levels of bad cholesterol. It was a finding that led multiple companies to pursue therapies

that could one day rake in billions. If our medical data does lead to a cure, should we get a cut. At the end of all this, I had given my health data away too many different companies, and in return, I'd gotten halfway to a free DNA sequencing and fifty four shares worth seven cents of hoop. These companies all make the argument that this was empowering, that I was taking control of my own information. I want to help advance medical research, but there was something disingenuous about the

suggestion that sharing my information would be beneficial to me. Instead, it felt like I had just been complicit in harvesting my own information for other people to profit off. I definitely did not feel empowered. And that's it for this week's prognosis. Thanks for listening. Do you have a story about healthcare in the US or around the world We want to hear from you. Find me on Twitter at the Cortes. If you were a fan of this episode, please take a moment to rate and review us. It

helps new listeners find the show. This episode was produced by Liz Smith. Our story editors were Drew Armstrong and Rick Shine. Frances Glivie is head of Bloomberg Podcasts. We'll be back on June six with our next episode. See you then,