General Session: Anne Wojcicki, CEO and Co-Founder, 23andMe with Meg Tirrell, Reporter, CNBC

Anne Wojcicki
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A Fireside Chat on the Future of Genetic Testing: Tuesday, May 8, 2018
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Video Summary
AI GeneratedAnn Wojcicki, CEO of 23andMe, discusses the necessity of patient advocacy and the democratization of genetic data. She argues that giving individuals direct access to their health information, such as BRCA risk data, empowers them to bypass systemic healthcare failures and take proactive control of their medical futures through informed decision-making and targeted follow-ups.
Please welcome CEO and co-founder of 23andMe, Ann Wojcicki, who will be interviewed by CNBC
host Meg Turrell.
I'm so excited to get to talk with Ann Wojcicki from 23andMe.
I want to actually start with something other than 23andMe.
I want to start with some tweets that you tweeted out about a month ago.
You don't tweet that much, so these caught a lot of people's attention.
It was about a really frustrating and almost kind of unbelievable healthcare experience
a friend of yours had.
Can you tell us about it?
Correct.
It was ironic because I just met with my social team and they told me, you should tweet more.
Then I had somebody who used to work with us who had been illegal, but then was a legal
... He got his US citizenship, but just hadn't signed up for all kinds of reasons, hadn't
signed up for care, had an infection in his heart and was at Santa Clara Valley Medical
Center.
It looked like he was potentially going to need to have a transplant or an LVAD.
He was told without a million dollar deposit, he couldn't get transferred.
I felt like it was one of those situations where here was an individual who was a relatively
good candidate to survive.
It was a really frustrating experience because I couldn't really assess the individual.
I couldn't get the medical records.
I was told it was seven to 14 business days to get the medical records.
It was clear he was imminently going to die.
I was like, well, I can't evaluate him if I can't get the medical records, but he's
going to die.
The records aren't terribly useful once he's dead.
I want a transfer, but I can't get anyone to evaluate the transfer unless I can get
the records.
I ended up tweeting and thankfully, actually, Stanford was quite responsive, but I got this
feedback.
Stanford had said that it was at least a million dollar deposit in order to bring this individual
over.
The conclusion for me was, one, when you're in a dire health situation, you need information.
You're really trapped.
The average individual is really trapped when they are in a medical system.
They don't know exactly what is going on.
They can't get a second opinion really easily.
All of us would agree, a lot of aspects of your care are dictated by what you can pay
for.
I think that's one of the things I'm a huge advocate for, being able to get access to
your medical records and just owning your information because the reality in this situation,
we couldn't get second opinions without actually getting those records.
It was really important to ... In this case, it was a matter of life or death without being
able to get that second opinion and getting those records.
After you tweeted, what happened?
The first thing you tweeted was about the million dollar requirement to be able to go
to Stanford.
The second thing you tweeted was about the seven to ten day delay in getting medical
records.
After you publicly shamed these two for doing that, did they then help you or your friend
or what happened?
I have to give kudos.
I think sometimes what happens in healthcare is you get systems that are full of really
good people who want to do the right thing, but the ship is just pointing in the wrong
direction.
This was an instance where I happened to know, I grew up on Stanford campus, I happened to
know some of the physicians.
It was a phenomenal physician who I gave enough of the case information to.
He was able to then connect to the doctor and said, look, I think he has a good chance
of survival if only we could get him over, I just can't get the transfer team to approve
it because he's uninsured.
We were able to, in large part, to send the legal aid services that I think are unfortunately
in peril of being cut by this administration, he was able to actually get from an uninsured
status to get actually onto Medi-Cal and then could get onto the exchange.
Part of the real heroes in this, one was my friend who was the physician who helped solve
the case, and second was the people who actually got him onto a coverage that then allowed
him to go and be transferred.
It's one of the things I think about.
My hope is the outcome of this is one, that hospitals actually will really enable real-time
access to medical records because you can't get a second opinion without real-time access
to medical records, and also that hospitals, especially a public hospital, that they never
tell a relatively low-wage worker that you need to shore up a million dollars to survive.
That instead you provide actually better services is like, again, figuring out how do you get
on the exchange.
I think those two things really were the ones that made a huge impact.
Your friend was obviously super lucky to have you as a friend, but you're kind of eluding
thought on Twitter, at least.
Oh, go ahead.
I was going to say, my conclusion, my mom had this unfortunate story where her little
brother ate a bottle of aspirin at 18 months, and he overdosed, and they took him from hospital
to hospital, and he unfortunately passed away.
They had called in the morning, and they said, how is he, and they said, well, he died.
I always grew up with this sort of rebellious side of you don't get great care unless you
advocate for yourself.
I had tweeted, I said, good care comes to those who complain, and I think that's the
reality.
If you don't ... We were actually looking at, there was some analysis that my sister's
at UCSF, and they had done some analysis.
I don't have the paper on this, but if you look at medical records, and you see whether
or not you're characterized as a good, or a nice, or cooperative patient, that you actually
got worse care.
The reality is you have to be proactive with yourself.
The number one thing for me that I try to inspire is, one, you should own your information,
but two, you have to be a proactive individual in managing your care.
Right, and some people just maybe aren't naturally that way, so it's more difficult, but one
tool that you're really trying to give people at 23andMe is their information.
Let's segue into talking about one of your most recent announcements, of course, which
is being able to provide risk data about certain BRCA patients.
Right.
This is such an interesting part of your business, because I was looking back, the FDA, when
it sent you that warning letter in 2013, the RCA was one of the things that it seemed most
concerned about, that you were providing directly to consumers.
You worked for almost five years to get back to this point now, where you're able to provide
that information.
Why is that so important for 23andMe to be able to provide?
I think two aspects were really important for me with the BRCA announcement.
One, I think that if we want to really scale healthcare, the idea of a one-to-one interaction
with a physician is just not realistic.
One of the things that 23andMe fundamentally was challenging is that, does all healthcare
actually have to go one-to-one through a physician?
Whether it's going to be a world of chatbots, or AI, or what is it, we were out to prove
that the consumer can get this information directly, that you don't need to have a physician
or a genetic counselor, that you can actually create content in such a way that for something
as serious as a BRCA report, you can actually get that directly.
The second thing for me is that we knew that we had thousands of customers who have the
BRCA variant.
For the last several years, we have sat on life-threatening information and not returned
this back to our customers.
It was critical for me to say, I know that there's thousands of people who would potentially
are very high risk for cancer, and there's something that they could do, and we are not
able to give them that information yet.
It was really important to me to make sure that we could get that information back to
our customers.
I think you guys actually have a video about BRCA.
Do you want to play it?
Yeah, we can play it.
You're better at pressing the button.
Did it work?
There we go.
All right.
When I took the 23andMe test, I discovered that I was 38% Ashkenazi Jew.
So I opened the health reports and was shocked to see the BRCA thing come up as you have
that mutation.
What I found out since is that if you're Ashkenazi Jew, you have a 1 in 40 chance of carrying
this mutation.
It was shocking to me because I never would have gotten this test taken.
No doctor would have asked me to do this because nobody in my family had ever had breast cancer
or ovarian cancer.
I found out about something that I could actually be proactive on.
I assumed I knew all about myself, and maybe it saved my life to have, on a whim, done
the 23andMe test.
Right.
There's definitely a number of, you know, women who have found out that they are high
risk and they have gone to, you know, follow-up testing and have gone on to have mastectomies
and urectomies.
And again, a lot of these women really credit having this information with potentially saving
their life.
And again, it's one of the things, like, we, it's really, again, from a coming into work
every day perspective, like, it's incredibly meaningful to know that this information is
being, you know, served to a lot of individuals who did not know that they had a family history
of breast cancer or did not know that they had any kind of Ashkenazi Jewish ancestry.
And I think the reality is that if you look at, you know, if I look around the room, you
can make a lot of assumptions about your background, your family history, and your ethnicity.
But it's not necessarily always reflective of what's actually in your DNA.
And to me, when we have done previous, when we had this out there before, we actually
published on this that roughly 30% of our customers had no idea that they had Ashkenazi
heritage.
And, or sorry, 30% of the BRCA finders had no idea that they had Ashkenazi heritage and
never would have qualified for screening.
So there's a good number of individuals out there who not, who would not have ever gotten
that information.
That said, there's definitely limitations to what we have.
We are not a complete sequencing panel.
But what we, you know, what 23andMe aspires to do is say, we are going to give you a lot
of information about, you know, yourself broadly across all genetics in the same way
you don't get a full workup every time you go to the doctor.
But if you have, you know, heart palpitations, you're going to get more of a cardiac workup.
So we try to provide, you know, a lot of incredibly meaningful content to our customers in a way
that we know people can understand it, that covers a really broad swath of information.
I have a new microphone.
Do you think it was because this information is potentially so actionable that the regulators
were more nervous about it than perhaps other things?
I think, I mean, I think BRCA is, it's, you know, there's a lot of emotion around breast
cancer in general.
And I think that there's, you know, for good reason, I can, I understand there's all kinds
of advocacy groups.
And so I think that the idea of challenging does this actually have to go through a physician
or a genetic counselor?
And can we, you know, provide enough information in a structured format so that customers can
really understand it, I think was, you know, controversial.
And that's one thing we've proven out that we have over 90% comprehension, all education
levels of our reports.
So I think there's a lot.
I mean, yes, there is, you know, people definitely, you know, it's, it's, you don't open up your
report and say like, oh, wow, like I got BRCA, like, that's great.
So people, you know, you get different response with ancestry composition and with asparagus
and cilantro, but like BRCA is serious.
It's really serious.
And it does change people's lives.
And it's one thing that we found with customers is that they say like, oh, I signed up because
I wanted to prove that I'm going to be a great sprinter.
And then I found out like I have this variant and now I have to get a mastectomy.
And so it's serious.
And I think we tried to provide enough infrastructure for people, you know, one, to really be aware,
do you want this information?
What does it mean for you?
And then really push and give that support to say, here is how you should follow up.
Some of the criticism when the news was announced was, well, it's not all the BRCA mutations
and people get this false sense of security if they're negative, do you have plans to
roll out more?
Will it be a comprehensive set at any point?
I think there's, there's a long tail that comes with sequencing.
We definitely talk about, you know, would we want to expand?
We always want to keep improving the tests that we have.
At this point in time, you know, this is what we have.
We have tested specifically to make sure that people understand the limitations that just
because you don't have one of these three common variants does not mean that you potentially
do not have the BRCA mutation.
So what I'm happy about is that we know that we have found a lot of people who would have
otherwise never qualified for screening and never would have gotten it.
So I feel really good about us as a company that we are really having a meaningful impact
on these people's lives.
Can we do better?
Can we have more?
Definitely.
But people who have a family history of breast cancer, people who, you know, are really concerned
about themselves, we're the first to point them to say, you should do a sequencing test.
You also provide now, if people want it, if they want to click on it, Alzheimer's risk
and Parkinson's risk.
What's the feedback been to people getting that information and what are they asking
for that you don't yet provide that you're thinking about providing in the future?
We get, so we've had Alzheimer's and Parkinson's now for a while and, you know, we were lucky
to actually leverage a lot of the research that a professor at Harvard, Robert Green,
had used on Alzheimer's that show that people can get this information on their own without
counseling and that they are fine.
When I look at our reports and what people are looking at, you know, people want their
ancestry composition and then right after that it's Alzheimer's.
And I think it's actually a really important point to take home that what the medical world
thinks people want or should want or should have is not reflective of what consumer interests
actually are.
I would say Alzheimer's in some ways is almost more controversial than BRCA because we routinely
get the question is like, well, there's nothing I can do, like I, the physician, what could
I do for you?
You have that variant.
What could I do?
And that's where there's like a really different consumer experience of like, you might actually
change your life.
You know, maybe you actually are more proactive in your health and you exercise more.
Maybe you change what you're eating.
Maybe you actually decide to retire earlier.
Some people actually then go and buy long term care insurance, which has all kinds of
other consequences.
So what we find is that we're reflective of what customers really want.
And customers want to know, you know, people all, everyone in this room, as much as we're
in the health industry, we'd all rather prevent disease than just effectively treat it and
manage it.
And so people actually want to know the risks.
Not everyone.
And like, that's why 23andMe is an optional service, but like people who want to know
what their risks are, like allow them to actually know.
And we find that with the right community around them, people do want to be proactive
and try and change their health.
Are there any limitations on what you think is appropriate to give people?
One example that kind of comes to mind is the MIT Tech Review is writing recently about
a service that can tell you sort of your IQ or where you fall in intelligence based on
your genetics.
Is that something you guys would ever provide?
We do.
I mean, we do interesting research actually on personality and even little things like
morning person, night person.
You know, IQ, I think, is a real minefield.
So we've tried to really focus on some of the most interesting, like morning person,
night person, we find actually fascinating and there are, we've published on this.
So I think that there's a whole, like we, we focus on what is it that consumers want
back?
And what is it that's potentially going to be, you know, again, we think about the impact,
the societal impact of what we're doing and what is it that we can, you know, do research
on that's going to have, you know, the most, you know, meaningful impact on your life.
And that's one of the, you know, when I look at our mission statement, it's about under,
you know, that you can access and you can understand and that you're going to benefit
from the human genome.
And the benefit is our research mission.
So IQ testing and others, like, again, it's, it's a minefield.
But that said, if I knew, for instance, like I'm much better at math than I am at, you
know, memorizing or languages, like I'm horrible at knowing languages, I'm decent at math.
Like would that actually help me be great at something?
I don't know.
There's a whole world of education, I think that is coming.
But again, we're focused right now just mostly on the disease side.
So let's talk about what you're doing with the data.
There's a lot of excitement and interest, I think, in, in your sort of drug discovery
efforts.
And do you ever see 23andMe being an actual drug developer?
We are.
I mean, we are, in the early days, the original idea of 23andMe was that we were going to
reflect consumers' interest in both prevention and in actually having treatments, and that
we would create this community and that we would partner with all the pharmas.
And what we found over time is that pharmas didn't really know necessarily what to do
with all this data.
And in some ways, it was a lot easier if we actually, we spent the time mining the data,
going through it, developing on, again, the early stage of research, getting it almost
to an IND kind of stage, that that actually made a lot more sense.
So we hired Richard Scheller, who was head of R&D at Genentech, and we have had a pretty
aggressive effort of saying, let's go through all of this data that we have, and can we
actually develop meaningful therapeutics?
And from having surveyed our customers, we see people who have an illness, they want
one of two things.
They want to know how, or three things.
How can I, is there a treatment for me that's really going to work?
How could I manage behaviors in my life?
And is there a risk factor for my children?
And so we look at all the ways that we think about 23andMe, we have a therapeutics division,
we think a lot about prevention, and then we obviously think about risk prediction.
So that is where, again, we spent a lot of time thinking about how we can actually move
that forward, and can we change the paradigm of drug development in some way by having
a higher efficacy rate?
And if you can have a higher efficacy rate of drug development, can you theoretically
bring the cost of drugs down, because it's not so expensive to develop them?
Oh my gosh, we could do a whole other 20 minutes on this, but I have two more things I want
to ask you in the next minute and a half.
The first one is, with the Golden State Killer case, which just happened, there's been so
much attention, and friends of mine who never thought about genetics or genetic databases
now have opinions about whether they'd share their data, and often they're pretty negative.
There's, if you Google 23andMe right now, there's a story that comes up that's like,
how to get your data off 23andMe.
I mean, have you had requests from customers to try to delete their data, or something
like that?
It's actually super easy for people who want you to just email us, and we can delete it.
We don't have, this is a super interesting case, and 23andMe was not part of it.
It was another company called GEDmatch, where it was, 23andMe has been very clear about
our transparency, the transparency report, and that we do everything that we can to fight
law enforcement.
23andMe is a community of individuals who want to learn about their health, and are,
for those who want to opt in to research, are consenting and participating in research.
We're not about law enforcement.
GEDmatch was a very open, it was not technically against their policies.
We are a big believer that people have the right to do what they want with their genome.
We get a lot of people concerned about their privacy.
We get the same, I would say, a good number of people as well, who are like, I'm consenting
for you to use my information to find killers, which is not, we joke, we're like, this is
not a business strategy we're pursuing.
But it is, without a doubt, I mean, it's, privacy is, privacy, I think, especially the
next decade, is going to be, it's a huge issue for all these new companies to grapple with.
And I've always said, we have no business if I can't protect your privacy.
So we do everything we can from basic things, like we require a lot of saliva.
And we do that in part because, like, you can't accidentally drool two mils of saliva.
Like you have to, so we think about these things.
How is it that we can make sure that you're actually in control and that you also, like,
for me, the definition of privacy is that you control your data.
It's about you having access to it just for you, but then allowing you to share it when
you want to be able to share it.
My last question.
Yeah.
IPO.
Oh.
I, you know, I was on Wall Street.
And I know that it's miserable to be a public company.
I don't know if there's anyone out there, who wants to be a public company?
Who wants to give earnings?
I mean, it's horrible.
So that said, there's always, you know, investor pressure.
You know, my investors, I have to say, actually are phenomenal and I'm really lucky.
And I've made it really clear, like, there's no glory in me being public.
And frankly, I, you know, I rarely do conferences, like, I rarely even have to do investor meetings.
Like, I work.
I actually get a lot of work done.
And I think that the reality is a lot of public companies or CEOs are spending a lot of time
meeting with investors and, like, managing process.
And so I'm not rushing.
There's a time and a place.
And I think the time and the place is when you know that you're, like, a very steady,
you know, growing, you know, company.
And, you know, now we have a lot to do.
I mean, healthcare is, you know, healthcare is ripe for innovation.
Holy cow.
It's so fun.
I mean, it's like, there's so much that can happen.
And I think that's where, in some ways, you want to have that nimbleness and, you know,
for all the companies out there, like, that's the reality is we're constantly, every single
day, you're learning, you know, something new, exactly, like, how do you want to shift
your strategy?
But healthcare, you know, healthcare is the last frontier, like, really ripe for innovation
and technology.
And so it's super exciting.
So, no.
All right.
I love that.
Both a long and a concise answer.
All right.
We'll leave it there.
And you guys get to hear from Anne again on the next panel.
So, Anne, thank you so much.
Thank you.
Thank you, Anne and Meg.
