There’s no shortage of companies that you can pay to test your
DNA. But now there’s a twist — some companies will pay you for
officially opened its portal today, and DNAsimple, which started in
November 2015, are building businesses based on the premise
that scientists will pay to access large databases of genetic
data. That data will be supplied by their customers who, in
return, will make money when their samples are used in
Until now, the DNA-testing business has been a one-way street,
financially speaking. Genetics researchers often turn to
biobanks, which store troves of biological samples from people
who are never compensated. Some companies like 23andMe, which
charges people $199 to analyze their DNA, sell access to their
information to academics and pharmaceutical companies.
But patient advocacy groups such as Global Genes and the
Genetic Alliance say this setup financially benefits everyone
involved in making scientific discoveries or therapies — except
DNA donors. Companies like Genos and DNAsimple, they say, could
give patients the control and cash they deserve for helping
boost research, provided that enough patients want in, and
enough scientists are willing to foot the bill.
The cash-for-DNA approach underscores a shift in the way
science is conducted and health care administered: Aided by the
internet to research medical treatments (and find people who
share their ailments), some patients are demanding that doctors
and scientists treat them as full participants in their
The shift comes as pharmaceutical companies and scientists are
entering an era of “precision medicine,” where treatments are
tailored to individual medical and genetic profiles, rather
“It’s basically validating that the genomics revolution is here
in a big way where the general public is now getting engaged,”
Nicole Boice, CEO of Global Genes, an advocacy group for
patients with rare diseases, told BuzzFeed News.
Genos, a San Francisco startup, is launching its research
portal after being in beta mode since the summer. Customers pay
$499 to send in a spit tube and have their “exomes” sequenced.
That is the part of the genome that contains most of the genes
already linked to diseases. Researchers will use Genos to
acquire DNA samples for their studies, and they and customers
can reach out to each other to see if they’d be a good match.
If a customer gets accepted, they’ll get paid — right now, $50
to $200, depending on the study — for participating and
answering questions about themselves.
“Our fundamental belief is you own and control your data,” Mark
Blumling, cofounder and CEO of Genos, told BuzzFeed News. “You
choose where your data should be used. If there is an economic
benefit coming back, which there is, you should get part of
that benefit. It’s just part of our general ethos.”
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At the outset, researchers will use Genos for five studies:
lymphoma, breast cancer, a type of skin cancer, neurological
and psychiatric disorders, and a rare type of neurodegenerative
disorder known as prion disease.
After Sonia Vallabh learned in 2011 that she had inherited a
genetic mutation that causes prion disease, for example, she
and her husband, Eric Minikel, changed their careers to
scientists and dedicated themselves to finding a cure.
Now researchers at the Broad Institute in Cambridge,
Massachusetts and founders of a nonprofit called the Prion
Alliance, they hope Genos will help them find a special type of
subject — people who naturally produce less of the deadly
protein that Vallabh has, and could therefore serve as a model
To make genetic discoveries, scientists traditionally find
people with a disease, then look for DNA differences associated
with that disease. But the people whom Vallabh and Minikel want
to find might be healthy, not sick.
“The genomics revolution is here in a big way where the
general public is now getting engaged.”
So these patients wouldn’t necessarily be sitting in a hospital
— but if scientists knew their genetic information from the
outset, they might find each other more easily. “The only way
to discover it is to first look at people’s DNA and then go
back and ask about their health,” Minikel said.
Advisers to Genos include some big names, such as geneticists
George Church and Dietrich Stephan, Nobel Prize-winning
economist Alan Roth, former StubHub president Chris Tsakalakis,
and former Uber executive Mina Radhakrishnan. The firm has
raised $6 million from NantOmics, a biotech company founded by
billionaire doctor Patrick Soon-Shiong.
DNAsimple, based in Philadelphia, launched a little more than a
year ago with a similar model. The difference is that customers
do not pay, but receive a flat $50 fee for every sample they
provide. More than 5,000 donors have signed up and a dozen
researchers use the platform, the company says.
Hank Greely, director of Stanford Law School’s Center for Law
and the Biosciences, said the biggest challenge he foresees for
these companies is whether they will draw enough participants
on all sides.
“I’m not sure how many individuals are actually going to be
interested in trying to sell their own DNA data,” he said. “On
the flip side, I’m not sure how many people are going to be
interested in paying money for people’s DNA sequences.”
One way to drum up interest, Greely suggested, would be to tell
people health or other information about themselves, based on
their DNA. 23andMe, for example, tells customers about their
ancestry and risks for some inherited diseases. But to provide
health information without going through a medical
professional, 23andMe spent more than a year getting FDA
Neither Genos nor DNAsimple provides that type of
interpretation. Genos users get a visualization of where their
DNA overlaps with a database of genetic variations. They also
get their data in a raw file, and access to genetic counselors
who can help them make sense of it.
As for signing up researchers, Genos tries to even the playing
field by charging Big Pharma firms more than academics and
nonprofits. DNAsimple charges scientists $155 for every match,
$50 of which goes to the customer.
Olivier Noel, DNAsimple’s CEO, stressed that the compensation
aspect of the service is secondary to the question: “How do we
advance scientific research when we have all the tools we need,
but we’re unable to get the participants we need because
they’re far away?” He added, “The idea was to solve that
problem, and not make money off people donating.”
But if this business model does take off and become mainstream
— a huge if, given how new these companies are — it could
fundamentally change the economics of science. A federal
law outlaws the sale of human organs for transplantation —
but not the sale of information about human bodies.
“If all research subjects started charging for their
participation, research would get more expensive,” Greely said.
“Less of it would be done. Arguably that’d be a detriment to
public health and public welfare. It would certainly be a
detriment to researchers trying to get published and the
[National Institutes of Health] budget.”
Lori Andrews, who directs the Institute for Science, Law and
Technology at Illinois Institute of Technology, argues that
researchers have already often “abused” their privileges by,
for example, patenting genes found in patients’ tissues and
preventing other researchers and doctors from studying them.
“Giving patients a greater property interest in their tissue
(whether through payment or allowing them to determine which
researchers should be able to do what with their gene
sequences) is important to redress this imbalance and breathe
life into the legal requirement of informed consent to
research,” Andrews wrote in an email.
Sharon Terry, CEO of the Genetic Alliance, said that while
money may motivate some people to participate in research, most
are in it for more altruistic reasons: They want to see results
for themselves, their loved ones, or society at large.
“Some people might think it’s bad to put any kind of commerce
in health at all, but it’s already in there,” she said. “We
just don’t have any part of it, we patients. Everyone else
makes a lot of money.”