The Promise And Potential Pitfalls Of Apple's ResearchKit
Most of the tech buzz these days has centered on the new Apple Watch — including on the potential for health-related apps. Less attention has been given to Apple's ResearchKit, an open-source mobile software platform released in March.
But the medical world is paying attention.
"It's designed to let medical researchers and developers create apps that can be downloaded through the app store, and then users can decide to join a study that's conducted solely through their phones," Arielle Duhaime-Ross, a science reporter at The Verge, tells NPR's Arun Rath.
So far, researchers have developed ResearchKit apps to study diseases including breast cancer, asthma and Parkinson's disease. Thousands of volunteers have signed up.
But Duhaime-Ross tells Rath there are concerns about privacy and informed consent.
Interview Highlights
On privacy concerns
When you join a [ResearchKit] study, you go through an informed consent process where they tell you about the risks of joining the study. They'll ask you whether you want to share your data with other researchers and any other partners, but they do explain that they will make that data anonymous.
And really, Apple is relying on these researchers, these institutions, to make sure that everything is kosher. And that's where it might get a little bit hairy, where data breaches might occur. It's very young and it's very unclear whether there will be any issues later on.
On the question of informed consent
Every app that I've tested so far tells you toward the end that there is no guarantee that we can protect your data completely. Usually when you do this, you do this in person with the researcher or on the phone. You have the opportunity to ask a number of questions. You have the opportunity to demonstrate that maybe you don't quite understand what you're signing up for.
Now, the informed consent process with the apps, they do ask you a number of questions to verify that you understand everything that you've just read. But these questions are yes/no questions and it's very easy to essentially fudge the process. ...
If you go into the Parkinson's disease app ... when you first decide to join the study, it asks you three questions. One of them is "Are you over 18?" The first time that I downloaded it, I pressed on "no" ... It said, "You're not eligible." I was able to press on the back button very easily and then I was able to answer again and say that I was over 18. So there's definitely a question about the ethics of this process.
On how Apple addressed some concerns after the release
Apple has asked ... that all apps have institutional review board approval. This means that at the institutions where they are based in, they need to have an independent ethics board review the work to make sure that the people who are partaking in it are properly informed about the risks, are aware of how everything will run, that the questions are valuable questions that are being asked and that we're not conducting a study of little value.
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Transcript
ARUN RATH, HOST:
Most of the tech buzz these days has been about the new Apple Watch, but Apple also recently released a new mobile software platform that could have a huge impact on medical research. It's called ResearchKit.
ARIELLE DUHAIME-ROSS: It's designed to let medical researchers and developers create apps that can be downloaded through the App Store. And then users can decide to join a study that's conducted solely through their phones.
RATH: That's Arielle Duhaime-Ross, a science reporter for The Verge. Already, researchers have developed apps to study a number of diseases. There's one for breast cancer, for asthma and one for Parkinson's.
DUHAIME-ROSS: They're monitoring things like how many steps you take. They're going to ask you to take a number of steps, and they're going to find out if you're shaky while you're taking them. They may ask you to draw a pattern on your phone's screen to find out, you know, how shaky you are, how good you are at maybe tapping a specific part of your screen. Being able to check in with people, you know, every day or every other day and then monitor their activities is really - it's very innovative.
RATH: And it's not been up for very long, but how many people have signed up for these apps?
DUHAIME-ROSS: Well, a number of people have. Actually, in the first six hours of Apple announcing the Parkinson's disease study, 7,000 people signed up. This was back in early March.
RATH: Wow.
DUHAIME-ROSS: And this was actually huge for people who study Parkinson's disease because the last really big study dealing with this condition only had about a thousand participants.
RATH: So that sounds great, but let's talk about, well, the darker side of things.
DUHAIME-ROSS: Right.
RATH: First up, with the problems - privacy.
DUHAIME-ROSS: Right. So the way that it works is that when you join a study, you go through an informed consent process where they tell you about the risks of joining the study. They'll ask you whether you want to share your data with other researchers and any other partners. But they do explain that they will make that data anonymous. And really, Apple is relying on these researchers, these institutions to make sure that everything is kosher. And that's where it might get a little bit hairy, where data breaches might occur. It's very young, and it's very unclear whether there will be any issues later on.
RATH: Is informed consent when you're using an app - does that also involve telling you that your data could be lost, who could be making money off of it - you know, the kind of complications that do come into this as a result of it being an app?
DUHAIME-ROSS: Every app that I've tested so far tells you towards the end that there is no guarantee that we can protect your data completely. Usually, when you do this you do this, you do this in person with a researcher or on the phone. You have the opportunity to ask a number of questions. You have the opportunity to demonstrate that maybe you don't quite understand what you're signing up for. Now, the informed consent process with the apps - they do ask you a number of questions to verify that you understand everything that you've just read, but these questions are yes-no questions. And it's very easy to essentially fudge the process.
RATH: And you were able to perpetrate a bit of mischief on one of these apps.
DUHAIME-ROSS: So, for instance, if you go into the mPower app - the Parkinson's disease app - now, I'm using this one as an example. It's - there's nothing wrong with it. It's just the one that I've fiddled around with. When you first decide to join the study, it asks you three questions. One of them is, you know, are you over 18. The first time that I downloaded it, I said - I pressed on no, I am not over 18. Answered all the other questions - and it said, you're not eligible. I was able to press on the back button very easily, and then I was able to answer again and say that I was over 18. So there's definitely a question about the ethics of this process.
RATH: And there was a change that maybe will address some of the issues. That's the introduction of independent ethics boards. Can you tell us how that's going to work?
DUHAIME-ROSS: Right. So Apple has asked, two weeks after they've released it to developers and researchers all around the world - on Wednesday, they said that they would also require that all apps have institutional review board approval. This means that the institutions where they are based in - they need to have an independent ethics board review the work to make sure that the people who are partaking in it are properly informed about the risks, are aware of how everything will run, that the questions are valuable questions that are being asked and that we're not conducting a study of little value.
RATH: Arielle Duhaime-Ross is a science reporter at The Verge. Arielle, thank you.
DUHAIME-ROSS: Thank you. Transcript provided by NPR, Copyright NPR.
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