DNA testing companies like 23andMe sell your data — how to delete it

Hollis
Johnson

• Popular DNA testing companies like Ancestry and 23andMe
  can — and frequently do —
  sell your data to drug makers.
• On Wednesday, pharmaceutical giant GlaxoSmithKline
  announced it was acquiring a $300 million stake in 23andMe —
  making that connection much more explicit.
• If that new has you wondering about
  how your own genetic material is being used, here’s a guide
  to deleting your DNA sample and data
  from 
  23andMe, Ancestry, and
  Helix.
  

Popular spit-in-a-tube genetics testing companies like Ancestry
and 23andMe can — and frequently do —
sell your data to drug makers. But on Wednesday, one of those
partnerships became much more explicit: pharmaceutical giant
GlaxoSmithKline announced it was acquiring a $300 million stake
in 23andMe.

As part of a
4-year deal between the two companies, GlaxoSmithKline will
comb
23andMe’s genetic data to look for potential new drugs to
develop, also referred to as drug targets. It will also use the
genetic data to inform how patients are selected for clinical
trials.

If that news has you thinking about how your
own genetic material is being used for research, know
that although the DNA you submit to these services is ostensibly
anonymized. However, leaks
can happen, and privacy advocates note such incidents could
allow your data to find its way elsewhere, perhaps without your
knowledge. 

Deleting your genetic data from these platforms can be a
surprisingly tricky process. Here’s how to navigate removing
your spit sample and DNA data from the databases maintained by
23andMe, Ancestry, and Helix.

23andMe may keep your spit and data for up to a decade

23andMe
Instagram

The core service provided by most commercial genetic tests is
built on the extraction of your DNA from your spit — that’s how
you get the results about your health and ancestry information.

After registering your spit sample online with 23andMe, you will be asked if
you’d like your saliva to be stored or discarded. But you are not
asked the same question about your raw genetic data — the DNA
extracted from your spit.

Based on the wording of a document called the
“Biobanking Consent Document,” it’s a bit unclear what
happens to that raw DNA once you decide to have 23andMe either
store or toss your spit. 

Here’s the statement’s exact language:

“By choosing to have 23andMe store either your saliva
sample or DNA extracted from your saliva, you are
consenting to having 23andMe and its contractors access and
analyze your stored sample, using the same or more advanced
technologies.”

That leaves a bit of a grey area as far as what 23andMe has the
ability to keep, and how they can use your DNA information. If
your spit or DNA sample is stored, the company can hold onto it
for between one and 10 years, “unless we notify you otherwise,”
the Biobanking Consent
Document states.

Still, you can request that the company discard your spit. To do
so, go to its Customer Care page, navigate to “Accounts and
Registration,” scroll to the bottom of the bulleted list of
options, and select the last bullet titled “Requesting Account
Closure.”

Once there, you must submit a request to have your spit sample
destroyed and/or have your account closed.

Ancestry won’t toss your spit unless you call, but you can delete
your DNA results

Sarah Kimmorley/Business Insider
Australia

If you want to delete your DNA test results with Ancestry, use the navigation bar
at the top of the homepage to select “DNA.” On the page with your
name at the top, scroll to the upper right corner, select
“Settings,” then go to “Delete Test Results” on the right side
column.

According to the company’s
latest privacy statement, doing this will result in Ancestry
deleting the following within 30 days: “All genetic information,
including any derivative genetic information (ethnicity
estimates, genetic relative matches, etc.) from our production,
development, analytics, and research systems.”

However, if you opted into Ancestry’s informed “Consent to
Research” when you signed up, the company says it cannot wipe
your genetic information from any “active or completed research
projects.” But it will prevent your DNA from being used for new
research.

To direct the company to discard your spit sample, you must
call Member
Services and request that they toss it.

Helix will toss your spit upon request, but can keep data
‘indefinitely’

In its most recently updated Privacy Policy, San
Francisco-based consumer genetics testing company Helix states
that it may “store your DNA indefinitely.”

The company also stores your saliva sample. You can request that
your spit be destroyed by contacting
Helix’s Customer Care. There, you’ll find a request form that
looks similar to the one 23andMe uses.