This Apple isn’t for everyone
If you are an iPhone user and updated to iOS 8.2 last month, you were greeted with a new icon on your home screen: the Apple Watch app. Of course Apple has made it so you cannot delete the app — and we can’t really fault them for wanting to assume all iPhone users will become Apple Watch owners. Still, the advent of the Apple Watch and its fleet of user-monitoring apps does raise a few questions for us.
In Tim Cook’s introduction of ResearchKit (a new a suite of apps by which users who opt-in can transmit health data to research scientists) he called it “the most profound change and positive impact” rolled out with the watch. As Buzzfeed’s Stephanie Lee reports however,
“Apple iPhone owners are far from a representative group: They tend to be younger, better educated, and wealthier than the many millions of Americans who don’t own one. This leaves some researchers wondering if the suite’s user demographics will skew findings about how diseases work, who suffers, and how to cure them. What’s more, there’s no way to verify the accuracy of the data that users self-report.
… The median iPhone user earns $85,000 a year, the market research firm comScore found last year; in 2013, the median income for a U.S. household was $51,939, according to census data.
… ResearchKit’s users will therefore skew toward a demographic that is markedly different than the one typically affected by the diseases ResearchKit targets. For example, two of the first apps now available will collect data on diabetes and cardiovascular disease, which disproportionately affect African-Americans. Parkinson’s disease is typically diagnosed around age 62, far above the age of the average iPhone user.”
We acknowledge that Apple is far from unique in facing this critique that they serve a niche population while claiming pluralistic good. Clinical trials are still imperfect at sampling a representative population for the drugs they test. As Hillary Clinton mentioned on stage in interview with Kara Swisher, many breast cancer trials did not include women patients until the 1990s. And it is possible ResearchKit’s users will be more diverse than average participants in clinical trials.
Either way, we applaud Apple for taking the measure of sharing that forthcoming wealth of user health data with individuals who can wield it powerfully for good. As much as possible, Apple should take steps to further democratize who benefits from this move. Our suggestions: Go beyond making ResearchKit open source and do not block the ability for Android developers to bring the open data sourcing of ResearchKit to its developers and users.
