[At the start of this decade, the federal government identified
consumer DNA testing as a burgeoning scam industry. Nonetheless,
according to MIT Technology Review more than 26 million people have
had their DNA tested. The scam is mainstream now.]
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CONSUMER DNA TESTING MAY BE THE BIGGEST HEALTH SCAM OF THE DECADE  
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Ed Cara
November 20, 2019
Gizmodo
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_ At the start of this decade, the federal government identified
consumer DNA testing as a burgeoning scam industry. Nonetheless,
according to MIT Technology Review more than 26 million people have
had their DNA tested. The scam is mainstream now. _

“The crux of the problem is that our genetics are only a piece of
the puzzle that influences our health.”, Image: Cryteria, CC-BY

 

At the start of this decade, the federal government called out
consumer DNA testing as a burgeoning scam industry. Little did we know
how it would explode in popularity. 

In 2010, the U.S. Government Accountability Office (GAO) published
an investigative report
[[link removed]] that bashed consumer DNA
test companies for misleading the public. It accused them of
deceptively claiming their products could predict the odds of
developing more than a dozen medical conditions; some even went as far
to offer equally dubious dietary supplements. The report had followed
a similar lambasting [[link removed]] of
the industry by the GAO in 2006. 

Also in 2010, the FDA publicly warned
[[link removed]] 23andMe and other
companies that genetic health tests were considered medical devices
and needed to be cleared by the FDA before they could be sold to the
public. Three years later, following a lack of response from 23andMe,
the agency took the harsh step of temporarily banning
[[link removed]] 23andMe
from selling its health-related tests at all.

Despite these hurdles, the DNA testing industry has nonetheless
exploded. According to a report
[[link removed]] by
MIT Technology Review this February, more than 26 million people have
had their DNA tested by the biggest names in the industry, with
AncestryDNA, 23andMe, and MyHeritage being the top three. 

Consumer DNA testing is undoubtedly now mainstream—but it’s not
much less scammy than it was when the decade started.

The industry has existed
[[link removed]] since
the late 1990s. But in 2007, the new kid on the block, 23andMe, became
the first company to offer a particular kind of at-home DNA test that
was cheap, easy to use, and promised to track back your origins
further back than ever before.

23andMe’s tests—and eventually those of its competitors—search
for and analyze the most common genetic variations, called single
nucleotide polymorphisms (SNPs), in our autosomal DNA, the 22 of 23
pairs of chromosomes not used to determine sex. For as little as $99
and a spit sample, these SNP-based tests are advertised to determine a
person’s ancestry or genetic health risks. But much of this realm of
consumer DNA testing, as the GAO report showed, can uncharitably be
described as complete bullshit.

The crux of the problem is that our genetics are only a piece of the
puzzle that influences our health. Sure, you can sometimes point to a
specific gene mutation that always makes someone sick in a specific
way if they carry it. But much more often, it’s a complex, barely
understood mix of gene variants that predispose us to develop cancer
or heart disease—and that risk can be amplified or muted by our
environment (including the crucial months we spend in the womb).

In the earliest days, companies didn’t much care for this
complexity, using weak evidence to make sweeping health claims about
which genes ought to make you more of a fish eater or develop
diabetes.

Following the FDA’s ban in 2013, 23andMe spent the next two years
devising genetic health tests that wouldn’t overpromise. In 2015, it
was allowed to sell tests that told people if they carried a recessive
mutation for genetic conditions like Bloom syndrome and sickle-cell
disease. A positive test meant their children would have a 25 percent
chance of having the condition if both parents were carriers. Two
years later, it became
[[link removed]] the
first company with FDA-approved tests that were allowed to tell people
about their risk of developing one of 10 diseases or conditions, such
as late-onset Alzheimer’s or celiac disease.

23andMe’s return to the health side of things wasn’t the only fuse
that lit a fire under the consumer DNA industry—the tens of millions
in annual advertising now being spent by companies like
MyAncestry certainly helped
[[link removed]],
too. But regardless, the FDA’s approval of these tests signaled a
new opening in the industry. And unsurprisingly, the industry as a
whole has ballooned, as has the glut of scammy services on offer.

 

If you want to get your genetic horoscope read this holiday, don’t
let me stop you. But it’s a big decision you should sleep on..

Many of these companies now steer clear of making blanket health
claims, but it doesn’t make them any less laughable. Your DNA
results can apparently tell you whether you’ve found your romantic
match
[[link removed]],
how to be good at soccer [[link removed]], and, like
a decade ago, how to find the perfect diet
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avoid bloating. Just don’t pay attention to the studies
[[link removed]] showing that
there’s no consistent link between genes seemingly tied to our
nutrition and any actual diet-related conditions.

It’s not only the tests vaguely connected to our health that are the
problem. As Gizmodo once illustrated
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even relying on these DNA tests to figure out your ancestry is a dicey
proposition. At best, you’re roughly estimating where your recent
ancestors lived, but that estimate can vary widely depending on which
company does the testing, thanks to the different algorithms they use.
And the farther away your lineage is from Europe, the less accurate
these tests will be for you, thanks to the fact that the
algorithms—as well as the research linking genes to our health—are
largely based on the DNA of white Americans and Europeans.

Health and ancestry aside, sharing your DNA with the outside world can
have unintended consequences. Law enforcement agencies are now using
genealogy databases to solve criminal cases, by connecting anonymous
crime scene DNA to DNA submitted to these family tree companies,
working backward through distant relatives to identify their suspect.
And while some people may be fine with this genetic sleuthing, there
are no clear rules on how this data can be used by law
enforcement—there’s merely the promise by private companies that
they will share responsibly. This November, police in
Florida obtained
[[link removed]] a
warrant to search through a third-party genealogy database, months
after the service had enforced
[[link removed]] a
new opt-in policy meant to let users decide if they wanted their data
to be searchable by police in these cases.

At a certain point, it won’t even matter whether you’ve decided to
share your DNA. A study last October estimated
[[link removed]] that
once enough people’s DNA is in a database—a scant 2 to 3 percent
of any given population—anyone could conceivably track the identity
of every person in that population using the same techniques genetic
detectives are using now. And researchers have already demonstrated
[[link removed]] how
less scrupulous forces, including hackers, could actively manipulate
these databases.

None of this is meant to diminish the real potential of genetics as a
field of research and medicine, nor the progress that has been made
over the past decade.

Companies like 23andMe rely on detecting thousands of genetic markers
—still only a tiny slice of our DNA. But the technology that allows
a person’s entire genome to be sequenced has vastly improved,
scaling down its costs and upkeep over the past decade. These
techniques can scan a person’s whole genome as well as the smaller
part of the genome that codes for the proteins our body’s cells
make, called the exome.

In 2010, for instance, the company Illumina initially offered its
whole genome sequencing at $50,000 a person; this year,
Veritas dropped 
[[link removed]]the
price of its service to only $600 and says it may soon charge as
little as $100.

These innovations have led to large-scale research projects that
collect genetic data from hundreds of thousands of people at once.
Scientists can scour through these large datasets to find new links
between our genes, traits, and medical conditions. This research has
helped us better understand longstanding questions
[[link removed]] about
our biology and health. Someday soon, genetic sequencing may also help
us optimize
[[link removed]] the
existing medical treatments people get, particularly for conditions
like cancer.

Right now, though, it’s still up in the air how useful this info
dump really is to the average person looking to stay healthy.

In March, 23andMe debuted
[[link removed]] (or
more accurately, reintroduced
[[link removed]]) a service
that tells people about their genetic risk of type 2 diabetes. Unlike
the tests approved by the FDA, it relies on what’s known as a
polygenic risk score. This adds up the very small contribution of many
genetic markers to a particular condition, which combined might be
enough to nudge your overall risk upwards.

The trouble is that these markers have little to do with why you get
type 2 diabetes—your age or weight play a much bigger role. And even
if the test does consider you genetically unlucky (an average risk
difference of 5 percent from a “typical” person), the advice
you’ll get is the same that anyone hoping for a long, healthy life
would get: eat more vegetables and exercise more. This test, as well
as many of those offered by the hundreds of big and small DNA testing
companies on the market, illustrates the uncertainty of personalized
consumer genetics.

The bet that companies like 23andMe are making is that they can
untangle this mess and translate their results back to people in a way
that won’t cross the line into deceptive marketing while still
convincing their customers they truly _matter_. Other companies
have teamed up
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outside labs and doctors to look over customers’ genes and have
hired genetic counselors to go over their results, which might place
them on safer legal and medical ground. But it still raises the
question of whether people will benefit from the information they get.
And because our knowledge of the relationship between genes and health
is constantly changing
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it’s very much possible the DNA test you take in 2020 will tell you
a totally different story by 2030.

Given how popular at-home DNA testing has become, there’s really no
sealing the genie back in the bottle. So if you want to get your
genetic horoscope read this holiday
[[link removed]],
don’t let me stop you. But it’s a big decision you should sleep
on. After all, once your DNA is out there, there’s no going back
[[link removed]].

[_Ed Cara is a science writer at Gizmodo. He can be reached
at [email protected] or via twitter at EdCara4
[[link removed]]._]

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