May 23, 2019 • 21 mins
On our latest episode of Prognosis, reporter Kristen V. Brown sells her DNA data to the highest bidder. Health data has turned into big business, but Brown quickly realized she wasn’t about to get rich. In exchange for an Amazon gift card or a few shares of marginal value, companies promise to use your data in the quest for better healthcare.
See omnystudio.com/listener for privacy information.
Mark as Played
Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Speaker 1 (00:00):
Selecting and selling your data. Data is the new natural
resource of our time. That's the most sought after information
on the black market now was more and more patient
information is shared on the internet. The lists are being sold.
We don't know who is buying them. It's not just
Facebook's Google, it's Amazon. It's also insurance companies, retail companies.
(00:27):
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.
(00:48):
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
(01:10):
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
(01:34):
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
(01:55):
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
(02:23):
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
(02:47):
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,
(03:12):
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
(03:34):
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
(03:55):
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,
(04:16):
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,
(04:39):
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
(05:00):
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
(05:23):
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
(05:44):
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
(06:07):
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
(06:27):
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
(06:49):
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.
(07:10):
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
(07:31):
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,
(07:51):
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
(08:13):
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
(08:37):
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
(08:59):
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,
(09:20):
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
(09:41):
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
(10:03):
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
(10:25):
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,
(10:46):
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
(11:07):
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
(11:27):
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
(11:50):
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
(12:13):
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
(12:34):
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
(12:54):
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
(13:17):
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
(13:39):
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
(14:01):
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,
(14:23):
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
(14:47):
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
(15:07):
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.
(15:30):
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
(15:52):
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
(16:12):
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
(16:33):
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.
(16:54):
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
(17:15):
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
(17:35):
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
(17:59):
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,
(18:20):
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,
(18:42):
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
(19:04):
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
(19:26):
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
(19:49):
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
(20:09):
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
(20:33):
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
(20:56):
definitely did not feel empowered. And that's it for this
week's prognosis. Thanks for listening. Do you have a story
(21:20):
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
(21:44):
be back on June six with our next episode. See
you then,
Selecting and selling your data. Data is the new natural
resource of our time. That's the most sought after information
on the black market now was more and more patient
information is shared on the internet. The lists are being sold.
We don't know who is buying them. It's not just
Facebook's Google, it's Amazon. It's also insurance companies, retail companies.
(00:27):
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.
(00:48):
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
(01:10):
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
(01:34):
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
(01:55):
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
(02:23):
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
(02:47):
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,
(03:12):
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
(03:34):
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
(03:55):
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,
(04:16):
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,
(04:39):
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
(05:00):
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
(05:23):
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
(05:44):
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
(06:07):
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
(06:27):
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
(06:49):
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.
(07:10):
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
(07:31):
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,
(07:51):
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
(08:13):
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
(08:37):
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
(08:59):
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,
(09:20):
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
(09:41):
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
(10:03):
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
(10:25):
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,
(10:46):
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
(11:07):
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
(11:27):
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
(11:50):
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
(12:13):
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
(12:34):
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
(12:54):
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
(13:17):
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
(13:39):
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
(14:01):
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,
(14:23):
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
(14:47):
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
(15:07):
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.
(15:30):
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
(15:52):
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
(16:12):
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
(16:33):
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.
(16:54):
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
(17:15):
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
(17:35):
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
(17:59):
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,
(18:20):
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,
(18:42):
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
(19:04):
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
(19:26):
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
(19:49):
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
(20:09):
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
(20:33):
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
(20:56):
definitely did not feel empowered. And that's it for this
week's prognosis. Thanks for listening. Do you have a story
(21:20):
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
(21:44):
be back on June six with our next episode. See
you then,
Host
Jason Gale
Popular Podcasts
Stuff You Should Know
If you've ever wanted to know about champagne, satanism, the Stonewall Uprising, chaos theory, LSD, El Nino, true crime and Rosa Parks, then look no further. Josh and Chuck have you covered.
Dateline NBC
Current and classic episodes, featuring compelling true-crime mysteries, powerful documentaries and in-depth investigations. Follow now to get the latest episodes of Dateline NBC completely free, or subscribe to Dateline Premium for ad-free listening and exclusive bonus content: DatelinePremium.com
On Purpose with Jay Shetty
I’m Jay Shetty host of On Purpose the worlds #1 Mental Health podcast and I’m so grateful you found us. I started this podcast 5 years ago to invite you into conversations and workshops that are designed to help make you happier, healthier and more healed. I believe that when you (yes you) feel seen, heard and understood you’re able to deal with relationship struggles, work challenges and life’s ups and downs with more ease and grace. I interview experts, celebrities, thought leaders and athletes so that we can grow our mindset, build better habits and uncover a side of them we’ve never seen before. New episodes every Monday and Friday. Your support means the world to me and I don’t take it for granted — click the follow button and leave a review to help us spread the love with On Purpose. I can’t wait for you to listen to your first or 500th episode!