Studying humans for science? Wrap your eyeballs around our fine print, says Apple
If you want to do research on fanbois, you'd better ask first
Apple has updated its App Store developer guidelines to include new restrictions on apps that gather health data for purposes of medical research.
The revised guidelines include a new paragraph aimed specifically at developers who want to take advantage of ResearchKit, Cupertino's new framework for health research.
"Apps conducting health-related human subject research must obtain consent from participants or, in the case of minors, their parent or guardian," the new clause reads.
In order to give consent, app users must be informed of the nature of the research being conducted, its purpose, and its duration, Apple says. They must also be told about any procedures they will undergo as part of the research and any risks or benefits.
Also, app makers must explain how they will handle research participants' health data and the extent to which it will remain confidential.
Finally, participants must be given a point of contact where they can ask questions about the research and withdraw from the program if they change their minds.
The new guidelines add to Apple's existing rules governing apps that use HealthKit, Apple's framework for gathering health and fitness data.
Among those rules are that HealthKit apps must publish clear privacy policies and that they must never share users' health data with other parties without the users' consent. Using health data for advertising, data mining, or other purposes unrelated to improving health is also a strict no-no.
Apple customers seem content that ResearchKit apps will respect their privacy. Although the tech was only announced on Monday, Bloomberg reported on Wednesday that 11,000 people had already signed up to participate in a cardiovascular study conducted by Stanford University, while more than 5,500 participants had signed up for another study on Parkinson's disease.
Some researchers are skeptical, however, that gathering data via apps will really be the boon to medical research that Apple suggests it will, particularly if the apps yield false or misleading information.
"Just collecting lots of information about people – who may or may not have a particular disease, and may or may not represent the typical patient – could just add noise and distraction," Lisa Schwartz, a professor at the Dartmouth Institute for Health Policy and Clinical Practice, told Bloomberg. "Bias times a million is still bias." ®