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How Much Should Big Tech Know About Our Personal Health Data And History?

MARY LOUISE KELLY, HOST:

Big tech knows more and more these days about your health. Take Facebook, which has been rolling out a new health tab connecting you to doctors, reminding you to get your annual physical. Or take Google, which announced this month it is acquiring Fitbit. So how much control do we have? How much control should we have over how much of our personal health data ends up in the hands of tech giants? It's All Tech Considered.

(SOUNDBITE OF ULRICH SCHNAUSS' "NOTHING HAPPENS IN JUNE")

KELLY: I am joined by Ben Moskowitz. He's director of Consumer Reports' Digital Lab. Hi, Ben.

BEN MOSKOWITZ: Hello.

KELLY: So I mentioned Facebook. I mentioned Google. Give us a sense of the landscape. What other companies have access into this particular slice of my life these days?

MOSKOWITZ: Five of the top six companies by market cap are tech companies. So we're talking about Microsoft, Google, Apple, Facebook, Amazon. And, you know, they need to continue growing. And so if you look across the marketplace, where is there great, tremendous potential for growth? It's health care.

KELLY: And what is the impact of this? Let's start with the examples that I just listed. Google buying Fitbit, for example, which I should mention for those of us not tethered to our Fitbits, it knows how many steps we walk. It knows how many hours we sleep. It knows, for women, when we're getting our periods and so forth. What are the pros and cons of Google knowing these kinds of things about us?

MOSKOWITZ: Well, from Google's perspective, you know, they want to create a product ecosystem that makes life easy for people just in terms of the functionality they get from these products. You know, in a certain light, the more data that can be collected about a person, the more valuable the insight about that person that can be sold to advertisers.

KELLY: So that's the bottom line is they want to collect this data so that they can sell it.

MOSKOWITZ: That's right.

KELLY: Sum up for me - so what is the downside here? From my point of view, if all of my data is going into my Apple Watch or my now about to be Google Fitbit or whatever it is, what's the risk?

MOSKOWITZ: You don't want people knowing everything about you the same way that when you go out in public, you wear clothes or you present in a certain way. Another harm is manipulation. So in the abstract here, you know, Google's a supercomputer. And if it's a supercomputer that knows all about who you are and how you think and what you want, imagine that supercomputer targeted at you and, you know, knowing that at a certain time of day, this is the kind of appeal that is going to land right.

KELLY: What about - I'm thinking of this form that I have to sign every time I go to the doctor - the HIPAA privacy rule, which is supposed to regulate things like exactly this, I thought. How much of my personal medical data is being shared amongst companies and providers? Does that apply when I download some fitness tracker on my cellphone?

MOSKOWITZ: No, it does not. And that's precisely the issue is that if you were to go to a hospital and create a health record, they would be governed under HIPAA and so they would have strict limitations on what they could do with that data. If you download a random app out of the App Store, the Google Play Store, then you wouldn't. And you could read - you know, they might say - they might claim to be HIPAA-compliant, but unless you read that privacy policy super closely, you know, you might not realize that they're sharing it for all kinds of purposes.

KELLY: I'm also thinking about a lot of the apps I download, I pick the free version, but there's a version that I could pay for. Do I have more privacy protections if I pay for it? In other words, are we starting to think about medical privacy as this expensive add-on that I have to pay for?

MOSKOWITZ: It depends, and it all goes down to what does the privacy policy say? But even, you know, if you read the privacy policy, it might be written in an overly broad way. It might be written in a way that says something very vague, like, you know, we may, in order to provide you with this service, share the information with X party. And beyond that, you just wouldn't know.

KELLY: Have we reached a tipping point, though, do you think, where we have all become so reliant on technology and our gadgets that we're willing to trade away a lot of our privacy for the convenience that they provide, whether it's health care or anything else?

MOSKOWITZ: What we know is that Americans really care about privacy. They feel like they don't have control over their personal information. In fact, just 9% of people in a nationally representative survey believed that they had a lot of control over the information. But the vast majority, though, think it's very important to be in control of who can get information - 74%.

KELLY: Yeah, we care but we feel powerless.

MOSKOWITZ: That's right. This is why I think it's a collective action problem. A lot of companies now are going out of their way to advertise and say, we provide you with granular privacy controls. And that's certainly a step in the right direction, but that's not going to solve the problem because not every company is going to be aboveboard in that way. And so it's going to require us to, you know, demand - well, first to define, then to demand the privacy laws that we think, you know, we deserve in this country.

KELLY: I suppose the other collective action that could be taken is just swearing off your Fitbit or your Apple Watch or whatever it is and not inputting all your data, doing it the old-fashioned way.

MOSKOWITZ: I don't think that the right answer is to say, let's just become Luddites and not use any of this stuff. You know, we need to demand rules so that we can get the benefits of the modern digital world and not have to sacrifice our privacy.

KELLY: Ben Moskowitz, thank you.

MOSKOWITZ: Thank you.

KELLY: He is director of Consumer Reports' Digital Lab. And we should note Facebook and Google are among NPR's financial supporters.

(SOUNDBITE OF GRACE JONES SONG, "PRIVATE LIFE") Transcript provided by NPR, Copyright NPR.

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