Speaker 1: Selecting and selling your data. Data is the new natural
Speaker 1: resource of our time. That's the most sought after information
Speaker 1: on the black market now was more and more patient
Speaker 1: information is shared on the internet. The lists are being sold.
Speaker 1: We don't know who is buying them. It's not just
Speaker 1: Facebook's Google, it's Amazon. It's also insurance companies, retail companies.
Speaker 1: Believe it or not, when you go to the doctor,
Speaker 1: the data from that doctor's visit is often sold to
Speaker 1: companies that have nothing to do with treating any illness.
Speaker 1: Electronic records companies, labs, pharmacies, insurers. They're all selling intimate
Speaker 1: data about you. It's not only big data, but big business.
Speaker 1: Welcome to Prognosis, bloom Brigs podcast about the intersection of
Speaker 1: health and technology and the unexpected places it's taking us.
Speaker 1: I'm your host, Michelle fay Cortes. This week, we're looking
Speaker 1: at a new kind of healthcare data broker. These companies
Speaker 1: don't just want to sell your data. They're also willing
Speaker 1: to pay you for it. But that's not really the point.
Speaker 1: Stay with us and we'll tell you what these companies
Speaker 1: are really after. Here's Bloomberg's health reporter Kristen B. Brown
Speaker 1: with the story. Okay, So I'm going to log into
Speaker 1: my Nebula account and see more opportunities there are for
Speaker 1: me to make some money off my DNA. That's the
Speaker 1: sound of me hunched over my laptop on a rainy
Speaker 1: Oakland afternoon, signing up to give my personal healthcare data away,
Speaker 1: or rather I'm signing up to sell it. Okay. So
Speaker 1: I'm going to take some surveys. Okay, So they want
Speaker 1: to know approximately how often do you drink alcohol? M daily?
Speaker 1: Are almost daily? Once twice a week, probably three or
Speaker 1: four times for a week. Uh, how many glasses of
Speaker 1: red wine do you drink? True white wine? I'm answering
Speaker 1: surveys about my health on the website of a company
Speaker 1: named Nebula Genomics. Nebula is one among a new breed
Speaker 1: of health data brokers. Like more traditional health data brokers,
Speaker 1: the company wants to profit off your data, in this
Speaker 1: case by selling it to researchers, but it wants you
Speaker 1: to profit off your data too. Nebula launched last fall
Speaker 1: with a lot of buzz. It was spun out of
Speaker 1: the lab of George Church, the Harvard geneticist as famous
Speaker 1: for his work as he is throwing wild ideas out there,
Speaker 1: like trying to resurrect the Wooly Mammoth Church, and many
Speaker 1: others in the scientific community believe that the more people
Speaker 1: share their genetic data, the sooner we will have treatments
Speaker 1: and cures for devastating diseases. This is oversimplifying it a bit,
Speaker 1: but the basic idea is that researchers could mine the
Speaker 1: genomes of people who share the same conditions and look
Speaker 1: for clues to treating those conditions, identifying the common bits
Speaker 1: of their genetic code that could be linked to disease.
Speaker 1: But if you want people to share their data, the
Speaker 1: company reasons, you have to give them something for it.
Speaker 1: This is a strategy long deployed among tech companies like
Speaker 1: Facebook and Google. You give Facebook all that data, and
Speaker 1: Facebook gives you access to Facebook. Nebula instead gives people
Speaker 1: access to freehold genome sequencing. Eventually, it also plans to
Speaker 1: offer other kinds of perks, like gift cards and money
Speaker 1: for sharing your data. I caught up with Kamalabad, the
Speaker 1: twenty four year old CEO of Nebula in San Francisco.
Speaker 1: Our goal is, you know, can we build this essentially
Speaker 1: a community of stakeholders that are willingly and transparently sharing
Speaker 1: their genomic data. You know, the main interest or main
Speaker 1: goal of nebulas to build data sets that enable scientists
Speaker 1: to do interesting things right, whether it's rational drug design,
Speaker 1: whether it's developing new use cases for precision medicine or
Speaker 1: pharmaca genomics. All this relies on large scale data sets
Speaker 1: that we don't really have access to today. In the
Speaker 1: genomics world, Companies like twenty three and Me have figured
Speaker 1: out that people will actually pay them to give away
Speaker 1: their health data. Consumers shell out as much as a
Speaker 1: hundred ninety nine bucks for twenty three and ME DNA test,
Speaker 1: and twenty three and Me can turn around and sell
Speaker 1: access to that information to pharmaceutical companies. Last year, and
Speaker 1: Me into three hundred million dollar deal with Glaxo Smith
Speaker 1: Klein to do just that. But Kamal says that's the
Speaker 1: wrong approach. We think a pretty big flaw on the
Speaker 1: existing model is that it's it's very transactional. Right. You
Speaker 1: kind of swipe your credit card, you get one of
Speaker 1: those spit kits, you spit in it, you send it back,
Speaker 1: you get your report, and you say, you know, great,
Speaker 1: that's it. Um what we want to incentivize people to
Speaker 1: do is come back over time, learn more about themselves,
Speaker 1: and share more information. That way, we can build a
Speaker 1: longitudinal view of somebody's health. Nebula wants to track your
Speaker 1: health over time to keep users coming back so that
Speaker 1: researchers can get a more complete picture of it a
Speaker 1: better data set. My own longitudinal health journey started with surveys,
Speaker 1: lots of surveys. I took a survey about cancer. Have
Speaker 1: I ever been diagnosed with cancer? No? And what about
Speaker 1: my diet? How many tables means have cooked vegetables do
Speaker 1: I eat first today? Table spoons? And my exercise habits?
Speaker 1: How many days you walk for at least ten minutes
Speaker 1: in a simple whole week. I like every day I
Speaker 1: walked from the bar ten minutes. I gave no feel
Speaker 1: information about my drinking habits and my medical history. I
Speaker 1: also uploaded my twenty train MEE data, which gives the
Speaker 1: company access to really intimate information about me, like whether
Speaker 1: I'm at risk for Alzheimer's or diabetes. At the end
Speaker 1: of all this, I had earned six hundred and fifty
Speaker 1: credits of the one thousand credits you need to get
Speaker 1: a free low grade whole genome sequencing instead of going
Speaker 1: through all this. By the way, you can also just
Speaker 1: buy the sequencing from Nebula for a hundred bucks. Recently,
Speaker 1: the company also launched a subscription service, which gives you
Speaker 1: access to things like new research about your genome and
Speaker 1: priority to participate in research studies. Another pitch the company
Speaker 1: makes is that if a researcher finds your information interesting,
Speaker 1: they might pay for a clinical grade sequencing and share
Speaker 1: that data with you. Comal told me that eventually there
Speaker 1: will also be opportunities to improve your own health by
Speaker 1: participating in research studies that, for example, give part have
Speaker 1: spens wearables to track things like heart rate. But as
Speaker 1: I was filling out all those surveys, I got the
Speaker 1: distinct feeling that I probably wasn't all that interesting to researchers.
Speaker 1: I exercise, I eat pretty well most of the time,
Speaker 1: and my family has no history of inherited disease other
Speaker 1: than really bad eyesight and pretty average health wise. Usually
Speaker 1: people's data is only valuable and aggregate when combined with
Speaker 1: data from millions of other people. Health data brokers are
Speaker 1: nothing new. They've actually been around since the nineteen fifties,
Speaker 1: but computers and then the Internet turned health data brokerage
Speaker 1: into a multibillion dollar business. Here's how it works. Companies
Speaker 1: collect de identified data from millions and millions of people,
Speaker 1: often paying pennies per record your blood test results, hospital records,
Speaker 1: prescription information. It all gets stripped of your name and
Speaker 1: sold by data broker middleman like a c A pharmaceutical
Speaker 1: company can buy access to your records to better sell
Speaker 1: you drugs, even as it might be difficult for you
Speaker 1: to get a copy of your own health care records
Speaker 1: from your doctor. And the practice, by the way, is
Speaker 1: totally legal under hip hop, the law that's been on
Speaker 1: the book since nine to protect patient privacy. I talked
Speaker 1: to Adam Tanner, who wrote a book about this. He
Speaker 1: was on a cruise ship off the coats of Vietnam
Speaker 1: when we talked. You go to the doctor's office, You
Speaker 1: close the door. You expect only the doctor will know
Speaker 1: what I'm telling about my health condition. But the doctor
Speaker 1: is often recording onto a computer the details of the
Speaker 1: of the patient's condition, and that's good to keep records
Speaker 1: on what patients are about. Many of those systems, however,
Speaker 1: those computer systems that connect doctors with hospitals and pharmacies
Speaker 1: and so on. Many of them sell anonymized data about patients,
Speaker 1: so it doesn't have your name in it, but it says,
Speaker 1: here is a woman this age, living in this part
Speaker 1: of town, and it joins records about you then with
Speaker 1: other previous records about you. Adam told me that this
Speaker 1: business really took off when records became digital. And digitization
Speaker 1: of medicine is a good thing in general because it
Speaker 1: keeps detailed records about you, but it has allowed this
Speaker 1: side business to establish itself in the shadows that most
Speaker 1: patients do not see, do not have a say in uh,
Speaker 1: and indeed many health professionals don't know about this. Data
Speaker 1: mostly gets used for marketing, and some of it can
Speaker 1: be pretty intimate or embarrassing, even though it's stripped of
Speaker 1: your name. These medical data dossiers usually include gender, age,
Speaker 1: and partial zip codes. Studies have shown that it's not
Speaker 1: always that hard to identify people based on it. One
Speaker 1: should be concerned because health information is often our most
Speaker 1: intimate information. You could be discriminated against the work, You
Speaker 1: could be discriminated against socially. Once this kind of information
Speaker 1: is out there in the ether, you can't put it back. Forever,
Speaker 1: and just knowing this basic information could be damaging to you,
Speaker 1: and it could be something relatively trivial. Adam makes a
Speaker 1: good point here in his book, he talks about how
Speaker 1: the actor Charlie Sheen wound up paying millions in bribes
Speaker 1: to keep his own HIV diagnosis private. For those of
Speaker 1: us that aren't famous, there is risk to life insurers,
Speaker 1: for example, if they access this data, would legally be
Speaker 1: allowed to discriminate against you based on it. But Adam
Speaker 1: told me he could also imagine some less obvious ways
Speaker 1: this data could be incriminating. I remember attending just a
Speaker 1: few years ago a lecture at the university and the
Speaker 1: woman was showing some videos on the internet, uh to
Speaker 1: demonstrate a point in her lecture, and off to the
Speaker 1: side of a YouTube video she was showing there was advertisement,
Speaker 1: are you depressed? We have the answer to your mental
Speaker 1: health issues. Um. Now, it could be a coincidence that
Speaker 1: those ads were served, but I can't erase from my
Speaker 1: mind the image that this is a person that may
Speaker 1: have had that issue. At a time when Facebook and
Speaker 1: Amazon and Google have woken people up to the value
Speaker 1: of their data, this new crop of companies that want
Speaker 1: to pay you for your data, are exploiting frustration with
Speaker 1: this model. Here's comal again the way the process exists today,
Speaker 1: no one is really winning except for these these intermediary
Speaker 1: data brokers. So I think this idea of let's let's
Speaker 1: empower patients to aggregate, curate, and share their their health
Speaker 1: data is something that's becoming more common and more mainstream.
Speaker 1: This is language you hear a lot in this world.
Speaker 1: The websites for these companies are filled with trust inspiring
Speaker 1: words like transparency and privacy. They promised control and ownership
Speaker 1: over your data. They also suggest that your data will
Speaker 1: be put to better use. The data bought and sold
Speaker 1: by traditional healthcare data brokers is often riddled with errors
Speaker 1: and without some serious looting, The people using I have
Speaker 1: no way of following up with the people the data
Speaker 1: come from if they want to ask follow up questions.
Speaker 1: It also hasn't really delivered the scientific or medical benefits
Speaker 1: that it could. Like I mentioned earlier, it mainly gets
Speaker 1: used for commercial purposes. But I wondered if giving your
Speaker 1: data away can ever really be an empowering move. Another
Speaker 1: company I gave my data to Luna DNA actually got
Speaker 1: permission from the Securities and Exchange Commission to give users
Speaker 1: shares of the company in exchange for data. Luna's pitch
Speaker 1: made me think of Facebook again and how surprised Facebook
Speaker 1: users were when they realized exactly how their data was
Speaker 1: being used, how they were paying for using the site.
Speaker 1: Luna CEO Bob Kane told me that giving people an
Speaker 1: ownership stake helps them trust that their data isn't being misused.
Speaker 1: Our data is very much ours. It's as unique as
Speaker 1: anything can get to defining us, and so it's one
Speaker 1: of those rights that nobody can take away from us.
Speaker 1: Una has set up a complicated corporate structure in order
Speaker 1: to make this happen. The database itself is actually a
Speaker 1: subsidiary of Luna, and that is what people get shares of.
Speaker 1: Since soft launching earlier this year, the company has been
Speaker 1: busy building partnerships with groups like Rare Disease Foundations, hoping
Speaker 1: patients with those diseases will contribute data and eventually lead
Speaker 1: to treatments. And when the database turns a profit by say,
Speaker 1: selling information to researchers, everyone gets a cut. Yes, so
Speaker 1: those shares are yours. They're non transferable because we don't
Speaker 1: think you can transfer the right to control your data,
Speaker 1: and they really represent your data in this system, and
Speaker 1: you're consenting for your data to be used at a
Speaker 1: population level to help researchers answer sort of higher level
Speaker 1: questions about links between your genome and your health or
Speaker 1: social determinants of health. How they're used is when we
Speaker 1: sign up with a commercial company, for instance of pharma,
Speaker 1: and they pay us to access to database. The proceeds
Speaker 1: will be shared with the community based on your ownership.
Speaker 1: I signed up for a Luna DNA account. I answered
Speaker 1: a few surveys about my health and shared my twenty
Speaker 1: three and me data. For that, I got fifty four shares.
Speaker 1: According to Luna's filing with SEC. Each of those shares
Speaker 1: are currently worth about seven cents. Based on those numbers,
Speaker 1: your whole genome would be worth one dollars. There are
Speaker 1: constantly new companies like Luna and Nebula popping up, and
Speaker 1: I shared my data with a bunch of them. I
Speaker 1: really wanted to get a sense of the entire landscape,
Speaker 1: to see what you can get when you give your
Speaker 1: own data away. Doc do AI gives people Amazon gift
Speaker 1: cards for sharing data and participating in trials. I didn't
Speaker 1: get anything for uploading my genome, and one of the
Speaker 1: trials I enrolled in a waitlist for would only earn
Speaker 1: me thirty of the one thousand points I would need
Speaker 1: to get a ten dollar Amazon gift card. Another company,
Speaker 1: in Blima, charges people to securely store their records on
Speaker 1: the blockchain, but you can also earn cryptocurrency for sharing
Speaker 1: your data. Yet another, Humanity dot co, pitches itself as
Speaker 1: a go between brokering data for its users and helping
Speaker 1: them get it cut. On the company's app and YouTube channel,
Speaker 1: there were all these testimonials from people proclaiming that ownership
Speaker 1: of data is a human right. I want to own.
Speaker 1: I want to own my data. I want to earn
Speaker 1: my data as my property because right now it is
Speaker 1: quite unclear. But Humanity, like the other companies, is also
Speaker 1: pretty early stage. There wasn't much I could do besides
Speaker 1: pledge my enthusiasm for the idea. My little data brokering
Speaker 1: experiment was starting to feel less like a mission of
Speaker 1: self empowerment and more like a waste of time. I
Speaker 1: talked with George Contreris, a law professor at the University
Speaker 1: of Utah who thinks a lot about these things. He
Speaker 1: was also skeptical. I mean the cynical view is that
Speaker 1: these companies are cropping up so that they can monetize
Speaker 1: the data, right, I mean, not not so that patients
Speaker 1: can profit from the use of their health data, so
Speaker 1: that these companies can become intermediaries and take a slice
Speaker 1: of every data transaction that comes along. All of the
Speaker 1: companies I talked to told me that people really shouldn't
Speaker 1: be in it for the rewards anyway. It's about helping
Speaker 1: the progress of science and medicine, and they want to
Speaker 1: do it more transparently and in doing so also collect
Speaker 1: higher quality data. But it's not the collecting health data
Speaker 1: doesn't have legitimate justifications. George said, there's a doctor's office
Speaker 1: and twenty people show up with the same strange flu symptoms.
Speaker 1: We we want that doctor's office to report that to
Speaker 1: the c DC, and we want them to figure out
Speaker 1: what's going on and then to develop a vaccine. There
Speaker 1: are a million contexts where it's important for health care
Speaker 1: providers to be able to provide data. His issue was
Speaker 1: more that this new breed of data brokers could actually
Speaker 1: wind up making things more complicated by starting to treat
Speaker 1: data like legal property. If your data is legal property.
Speaker 1: All of a sudden, there are all these new issues,
Speaker 1: like asking permission every time someone wants to use it
Speaker 1: and figuring out things like who controls your data when
Speaker 1: you die. If you are in a situation where the
Speaker 1: centers for disease control, or hospitals or pharmaceutical companies vaccine
Speaker 1: companies needed to figure out how to pay somebody every
Speaker 1: time they wanted to use some data, you know the system.
Speaker 1: The system would a become much less efficient and fee
Speaker 1: would be come much more expensive. Both of those are
Speaker 1: not good for public health, George said. Ironically, in this
Speaker 1: new model, people might wind up giving away even more
Speaker 1: information and having fewer protections for it. They're better protected
Speaker 1: under the current system with HIPPA than they are with
Speaker 1: these data brokers, who you know, are pretty uncontrolled, unregulated,
Speaker 1: and you know you you basically just have to trust them,
Speaker 1: although they're you know, they're really just profit oriented startups
Speaker 1: at this point. Um so I would honestly rather trust
Speaker 1: my hospital than than one of these data brokers to
Speaker 1: use my data properly. I talked with a few other
Speaker 1: experts in the space though that disagreed with George. Adam,
Speaker 1: the guy who wrote the Health Data Book, and Eric Topol,
Speaker 1: a geneticist who has written a lot about patient access
Speaker 1: to data, both told me they were actually optimistic, so
Speaker 1: long as these companies are transparent and give people choices
Speaker 1: and how their data is used, the point of collecting
Speaker 1: all this data, after all, to help advance science and medicine,
Speaker 1: and to find cures for devastating diseases and understand more
Speaker 1: about how the human body works. It's hard to argue
Speaker 1: with that. But in reporting this story, I couldn't help
Speaker 1: think about another story, the now famous story of Henrietta Lacks.
Speaker 1: Henriette A. Lacks was a black woman who died of
Speaker 1: cancer in the South in the nineteen fifties after getting
Speaker 1: pretty lacking medical treatment, But doctors harvested her cells, which
Speaker 1: turned out to have some special characteristics. They didn't die.
Speaker 1: The HeLa cells proved invaluable to medical research, and with
Speaker 1: their help, many companies got rich. Well. Henrietta's family, at
Speaker 1: times barely got by. What if the genome you were
Speaker 1: paid twenty one for winds up leading to a billion
Speaker 1: dollar cure. Most of us have pretty average datum, but
Speaker 1: some of us don't. It was one thirty two year
Speaker 1: old aerobics instructor in the Dallas suburbs that led researchers
Speaker 1: to a mutation in the gene pc s K nine
Speaker 1: that seems to low or levels of bad cholesterol. It
Speaker 1: was a finding that led multiple companies to pursue therapies
Speaker 1: that could one day rake in billions. If our medical
Speaker 1: data does lead to a cure, should we get a cut.
Speaker 1: At the end of all this, I had given my
Speaker 1: health data away too many different companies, and in return,
Speaker 1: I'd gotten halfway to a free DNA sequencing and fifty
Speaker 1: four shares worth seven cents of hoop. These companies all
Speaker 1: make the argument that this was empowering, that I was
Speaker 1: taking control of my own information. I want to help
Speaker 1: advance medical research, but there was something disingenuous about the
Speaker 1: suggestion that sharing my information would be beneficial to me. Instead,
Speaker 1: it felt like I had just been complicit in harvesting
Speaker 1: my own information for other people to profit off. I
Speaker 1: definitely did not feel empowered. And that's it for this
Speaker 1: week's prognosis. Thanks for listening. Do you have a story
Speaker 1: about healthcare in the US or around the world We
Speaker 1: want to hear from you. Find me on Twitter at
Speaker 1: the Cortes. If you were a fan of this episode,
Speaker 1: please take a moment to rate and review us. It
Speaker 1: helps new listeners find the show. This episode was produced
Speaker 1: by Liz Smith. Our story editors were Drew Armstrong and
Speaker 1: Rick Shine. Frances Glivie is head of Bloomberg Podcasts. We'll
Speaker 1: be back on June six with our next episode. See
Speaker 1: you then,