During a House Oversight Committee hearing on Tuesday, Rep. Scott Perry (R-PA) questioned Anne Wojcicki, Founder and Board Member of 23andMe, Inc., about ‘discarded’ participant data.
00:06Ms. Woosicki, when a customer comes to 23andMe, are there, I assume there's, I don't know,
00:16so I'm asking, there's disclaimers, there's information where you let them know that their data is going to be
00:23obviously used to provide the information that they're looking for, their ancestry,
00:27maybe their health information, whatever you provide, right?
00:30Is there information also letting them know that it might be used anonymously or otherwise for other purposes
00:40when they access your service?
00:44Great question, I appreciate that.
00:47The goal of the company has always been about transparency and choice for our customers
00:54and it's an area I feel incredibly passionate about that too often in healthcare,
00:59customers are not actually given transparency and choice with their information.
01:03So when you sign up for 23andMe, it is not a simple process.
01:09There's a number of very easy to understand explicit consents and there's never a default.
01:16So for example, if you go through 23andMe, we don't default you into research.
01:21You have to actively click yes.
01:24So during that process, it is, you know, easily a ten minute final process.
01:29So customers are choosing to allow, and I'm just paraphrasing it the way I would say it,
01:35choosing to allow you to use their data as you kind of see fit with who you see fit,
01:41whether it's a pharmaceutical company or maybe in this case, I'm not saying you do, but another country.
01:49Is that generally correct? I mean, they're choosing what they allow, right?
01:54Correct. So we have a, it's a consent form that has gone through an ethics review.
02:00It's under an institutional review board.
02:03So it specifically allows us to do research and only with qualified researchers.
02:08So when you say, and this is moving into a little bit of a different direction, I'll probably get back to that,
02:13but when the data, you said it was discarded, you said you used the term discarded.
02:17Does that mean destroyed or just discarded?
02:20Destroyed.
02:21Destroyed. How is it destroyed?
02:23I'm not aware of the specifics around how it's destroyed.
02:25So it could be just thrown away.
02:27Look, I'm just asking that question because you can learn a lot by going through somebody's trash, right?
02:32And I'm not saying somebody did, but so in this context, as I read about you, bankruptcy doesn't necessarily mean the end of 23andMe.
02:39As a matter of fact, it seems like it means like it's going to continue under some other structure.
02:45Is that about right?
02:46It's not going away.
02:47It's just going to continue under some other, whether you buy it or whether Regeneron.
02:5023andMe is not going, and the data is going to be around.
02:53It sounds like.
02:54Am I correct about that, or is that the goal?
02:56That is the correct hopeful outcome, yes.
02:58So is 23andMe precluded by law from selling all or some of the data or partnering with somebody that could do that?
03:08Are they precluded by law?
03:10And I'm asking the question because I don't know.
03:12Mm-hmm.
03:13Is your company or the one that you started and want to have again, is it precluded by any law from using that data or partnering with somebody that could use the data any way they want?
03:25Is there any law that stops you from doing that?
03:28I think that's a great question.
03:30I'm not an expert in all the different laws.
03:32I would like to highlight there was another genetics company that just went through Chapter 11 that was successfully just sold.
03:39But you don't know, okay, maybe you don't know of a law that precludes.
03:43Should there be?
03:44Like, should there be?
03:46And look, I'm not, consumers and American citizens or whatever have the freedom to make choices.
03:52And if you make bad choices, like I'm not using your service, ma'am.
03:55I don't want you to know.
03:57Like, I marvel at the amount of people that are concerned about the federal government's intrusion into their personal lives but are happy to give private companies all that data.
04:06But that's their choice and I wonder if it should be.
04:09Well, I think it should be.
04:11But what obligations do you have?
04:13So maybe the question should be, what moral or ethical obligation does a company like yours, or yours in particular, or 23andMe, maybe the better way to put it,
04:23what obligation do you have to safeguard that information from either being purchased or through partnering with somebody like the Communist Party of China or somebody affiliated with them or the People's Liberation Army?
04:37What moral and ethical obligations do you have?
04:41I think the most important thing that 23andMe can do is make sure that we're always giving people choice.
04:48And I think that the most important thing in this process is to make sure long-term that customers always have that opportunity.
04:54Yeah, I understand that, but you're not answering my question.
04:57What obligation does your company or companies like yours have, knowing that this is personal information, that it might be, that it could lead to national security implications and certainly personal implications that are deleterious to those who subscribe?
05:14What obligations do you have or should you have or companies like yours have?
05:19What obligations, moral or ethical?
05:21So I think there should be.
05:22I think that's why we're in a bankruptcy hearing where there is oversight on it and very concerned about where it is going.
05:29And that is specifically why I have put in a bid as a non-profit entity to acquire it.
05:35I yield.
05:37Chairman Yieldsack, Chair recognizes Mr. Superman from Virginia.
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