Rick Shera: privacy lawyer on the US states suing 23andMe over plans to auction off genetic information

Biotechnology company 23andMe is being taken to court by over 27 US states over plans to auction off customers' personal genetic information without their consent.

The company has collected biological samples and genetic information from over 15 million customers - including many here in New Zealand.

Privacy lawyer Rick Shera says 23andMe's built a tempting service - but you never know where this stuff will end up.

"We don't know what they're going to do with it, and that's the problem. Terms of service and privacy policies can be changed almost willy-nilly these days."

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Episode Transcript

Speaker 1 (00:00):
Now DNA testing company twenty three and meter is being

(00:02):
taken to court by a huge number of US states
because what's going on is that they want to sell
off the customer's personal genetic information. But this is without
customer's knowledge or consent. The company holds DNA info for
more than fifteen million people, many of them will be
in New Zealand as well. Rick Shearer is a privacy lawyer. Hey, Rick, Hi,
how are you well? Thank you? If you've sent your

(00:23):
DNA into the loot, should you be worried?

Speaker 2 (00:26):
I've said that right from the start. It's highly tempting.
Obviously we all want to know where we came from
and who were related to, but one never knows where
these things are going to end up.

Speaker 1 (00:36):
Where are they going to end up? So apparently, if
you have pharmaceutical company said last month that would paid
two hundred and fifty six million US dollars for it,
what do they do with it?

Speaker 2 (00:46):
Yeah, well they'll use it to develop pharmaceuticals, no doubt,
and for any other purposes that they might want to
use it for. They say, of course that they will
abide by the privacy policies and so on, that the
company already had. But though, like many privacy policies are
a little bit of opaic, you don't quite know where
it's going to end up or what they're going to
do with it.

Speaker 1 (01:06):
So what's the worst that they can do with it? Rick?
I mean, because increasingly, I'm sure you're experiencing this. Increasingly
we are getting we are living in a world where
our information is just widely available to companies, Google, et cetera. Right,
So why should we What are these guys going to
do with it? What should be worried about?

Speaker 2 (01:23):
Well, we don't know what they're going to do with it,
that's the problem. And terms of terms of service and
privacy policies can be changed almost welly Nelly, these days
where we're used to getting the email in our box
saying oh, by the way, our privacy policy has changed,
if you continue to use our service, then you've accepted it.
The difficulty here, I think is that that's all very well,
where you know you're giving up some sort of personal

(01:45):
information of some data, even a credit card. You can
change your credit card when you like, you can't change
your DNA. So once it's out there, and once it's gone,
it's gone for good. And of course, with the increases
in technology, the use of DNA to all sorts of things,
including identifying US just for run of the mill types
of things is going to become more prevalent, so the

(02:06):
ability for people to impersonate US using DNA is likely
to increase as well.

Speaker 1 (02:10):
Hey, very good point, Rick, Thanks very much, appreciate it.

Speaker 2 (02:13):
Rick.

Speaker 1 (02:13):
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