5 biggest risks of sharing your DNA with consumer genetic-testing companies
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KEY POINTS
- Genetics testing companies, like Veritas
Genetics, Ancestry and 23andMe, are providing consumers with an
unprecedented level of access to their personal genome.
- Privacy risks are not well understood by
consumers.
- Law enforcement and the federal government can pressure these companies to share your DNA.
Some
individuals worry they will discover things about their DNA that will be
frightening — namely, the risks they run of contracting various diseases — and
not know how to move forward with the information. Professional scientific
skeptics contend the information may not even be as accurate as claimed, and
lead people to make questionable health decisions. But there’s another type of
risk that consumers aren’t focusing on as much, and it’s a big one: privacy.
There is nothing more private than your personal genetic information, and
sending away for a personal genome kit means sharing your DNA with the testing
companies. What do they do with it, beyond providing consumers with genetic and
health assessments?
That’s a
question consumers need to weigh as they consider genome testing.
Companies in
this space, including 23andMe, Veritas Genetics and Ancestry, have a good
reason to protect your DNA — their business future depends on maintaining the
trust of consumers. But there are thorny issues related to genetic privacy that
still today don’t have easy answers or iron-clad legislative protections. And
regulators aren’t convinced they are doing right by consumers. A recent Fast
Company report indicates that 23andMe and Ancestry are being investigated by
the Federal Trade Commission over their policies for handling personal info and
genetic data and how they share that info with third parties.
“The key
thing about your genetic data ... it is uniquely yours. It identifies you, so
if you are going to entrust it to a company, you should try to understand what
the consequences are,” said Jennifer King, director of consumer privacy at
Stanford Law School’s Center for Internet and Society, whose research on the
issue and interviews with individuals shows a lack of consumer knowledge.
Here are
five of the biggest privacy risks for consumers sharing their DNA with testing
companies.
1. Hacking
Obviously,
this is not a risk that the genetic-testing industry alone faces, but it is an
industry that has a unique set of information on its consumers. And there was a
recent hack in the space. More than 92 million accounts from the genealogy and
DNA testing service MyHeritage were found on a private server, the company
announced earlier this month. DNA data, specifically, was not breached, the
company said. But a hack in this space is a concern, regardless.
“Protecting
customer data remains Ancestry’s highest priority,” a spokeswoman for the
company said. “We have invested heavily in building strong data security, and
we make ongoing investments to continuously strengthen our security measures.”
2. Who may
profit on your DNA? The answer: Not you
One of the
most compelling signs that consumers have a positive view of these companies is
that a majority agree to let them share DNA with researcher partners. All of
these companies make clear that they will not share your DNA with any third-party
unless you explicitly consent to it, but as 23andMe data shows, the vast
majority of consumers opt in — at 23andMe, more than 80 percent. Ancestry and
Veritas do not provide data on the opt-in percentage.
23andMe
provides consumers the choice of opting into research conducted on behalf of
academic, nonprofit and industry organizations. They also offer an option to
consent separately to specific disease studies in which their DNA is used in
conjunction with for-profit drug companies, such as the Parkinson’s disease
research conducted with Genentech
and the lupus and IBD research conducted with
Pfizer
.
“If
customers don’t consent, none of their data is shared,” a 23andMe spokeswoman
said.
Source :From
CNBC
By Eric Rosenbaum
PUBLISHED SAT, JUN 16 2018
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