How DNA-testing platforms like Ancestry, 23andMe share your data

Hollis
Johnson

Perhaps you didn’t intend for that spit sample you shipped off to
be used for research on antacids. But that could be what happens
with some of the data that genetics-testing companies like
Ancestry, 23andMe, and Helix have collected from billions of
customers and stored in their databases.

Both Ancestry and 23andMe have a history of sharing anonymized
consumer data with private companies, also known as “third
parties.” Last week, 23andMe took that policy to a new level when
it announced a plan to share the genetic
data of millions of consumers with pharmaceutical giant
GlaxoSmithKline to help the company develop new drugs.

23andMe also collaborates with handful of other drug companies
and with institutions like P&G Beauty, the company behind
Pantene shampoo and the antacid Pepto-Bismol.

Helix, the genetics-testing company created by National
Geographic, has partnerships with roughly 25 companies as well.

Here are the private companies that the biggest genetics-testing
companies share data with

Glassdoor

Apart from its partnership with GlaxoSmithKline, 23andMe has
active partnerships with at least four other large pharmaceutical
companies: Alnylam Pharmaceuticals, Biogen, Pfizer, and
Genentech.

Another 23andMe collaborator is P&G Beauty, the
company behind products like Crest toothpaste, Ivory soap, and
Bounty paper towels. In addition to these private partners,
23andMe shares its data with several public academic institutions
and nonprofit research groups like the University of Chicago.

Ancestry, which maintains a
5-million-person consumer database of genetic
information,
once partnered with Google’s stealthy life-extension spinoff
Calico to study aging. But a company spokesperson told Business
Insider that Ancestry is currently only partnered with
universities and research institutions. These include
the University of Utah and the American Society of
Human Genetics.

Helix has active partnerships with about 25 companies, according
to Justin Kao, Helix’s co-founder and senior vice president of
business development. Kao told Business Insider that the list
includes at-home lab testing startup EverlyWell and healthcare
provider Geisinger Health.

But unlike Ancestry or 23andMe, which have shared anonymized
customer data with companies who use it for their own research,
Helix makes its genetic sequencing technology available to
private companies for other uses. EverlyWell, for example, uses
Helix’s technology to offer customers at-home DNA tests for food
sensitivity and testosterone levels. And National Geographic uses
Helix for its genealogy tests.

Why genetics testing companies share your data with third parties

Hollis Johnson/Business
Insider

A big reason genetics-testing companies share data with third
parties is for research. Many scientists want to learn more about
the genetic roots of various conditions and diseases in the hope
that this information will lead to better treatments or even
cures. Both nonprofit academic institutions and drug companies
are doing this kind of work.

“We all have some disease or health issue that we care about.
23andMe has created a research platform to enable interested
customers to participate in research — to not wait for solutions
to appear, but for people to come together and make discoveries
happen,” 23andMe CEO Anne Wojcicki wrote in a letter to customers
after the deal with GlaxoSmithKline was announced. 23andMe did
not respond to a request for further comment.

The average customer who chooses to let 23andMe share their data
for research contributes to more than 230 studies on topics
including asthma, lupus, and Parkinson’s disease, the company
says.

Similarly, Ancestry’s partnership with Google’s Calico was aimed
at
studying the genetics of longevity, though neither company
has yet published any research that resulted from the
collaboration. 

How to choose what data you share — or delete it altogether

When you register your spit sample with Ancestry, 23andMe, or
Helix,
you’re offered choices about whether you want to share your data,
when, and with whom. However, privacy advocates have pointed
out that these options can often be confusing. 

Plus, when asking customers whether they agree to share their
data with third parties, Ancestry, 23andMe, and Helix all use
different language to describe the choices and present the option
at a different stages in the sign-up process. That can make
wiping your data from any of those platforms difficult and
time-consuming.

Furthermore, if a leak or hack were to happen, such incidents
could allow your data to find its way elsewhere, perhaps without
your knowledge.

It can also be difficult to prevent your data from being used by
a new collaborator who wasn’t partnered with the company when you
signed up.

This was a particularly vexing issue for privacy advocates who
watched the
23andMe deal with GSK unfold, since the partnership
automatically pulls from all customer data and requires
individuals to opt out if they don’t want to participate.

“The very setup of this venture suggests that its initiators are
not quite serious about 23andMe’s customers’ informed consent,”
Udo Schuklenk, a professor of bioethics at Queen’s University,
told Business Insider via email.

It’s not easy to delete
your information from genetics-testing platforms after you’ve
signed up. (If you want to delete your genetic data from one of
these sites,
check out our guide). If you’ve opted to share your data for
research, 23andMe could keep your physical spit sample — and the
genetic data gleaned from it — for
up to a decade.