An Apple all day keeps the doctors monitoring you 24/7
I wasn’t paying much attention to the miasma emanating from last week’s Apple presentation, which seemed to consist entirely of The Watch and its astonishing pricing. So the news about Apple’s ResearchKit came to me in an uncommon way: in an office visit with my cardiologist, who is quite excited about the app’s clinical research possibilities.
He’s not the only one; there’s real giddiness about extracting Big Clinical Data 24/7 from people whose digital devices are their constant companions, all but surgically implanted. Theral Timpson of Mendelspod summed it up thus, “It’s an all out open source platform for medical research that has open science folks drooling.”
I guess ResearchKit is the logical endpoint of FitBit and other manifestations of the mania for self-monitoring. ResearchKit will pull health data (with permission, Apple hastened to assure us) from people’s iPhones, Apple Watches, and maybe other devices, and deposit it with research projects. It’s open source, so at Wired Marcus Woo says it could be available eventually for non-iThings, but no firm word on that yet.
Woo quotes researchers as saying the fact that there are millions of iPhone users will rule out selection bias in the studies, but also points out that Apple device users are on the whole young, white and Asian, and affluent. He notes, “Not exactly representative.”
ResearchKit is already around in 5 pre-Watch apps available for the iPhone, so if you’re eager to be a research subject, you don’t have to wait until April. At Stanford Medicine, one of Apple’s A-list collaborators in ResearchKit, Becky Bach blogged at Scope that they were pretty darn excited about MyHeart Counts. Alan Yeung, MD, an app architect and medical director of the Stanford Cardiovascular Health Department, rhapsodized about the potential for a million downloads, for doing much larger population studies than in the past, and also for significant improvement of data accuracy because it’s being gathered automagically.
On March 18, Scope’s Kris Newby reported proudly that nearly 28,000 people had consented already to provide their data to the MyHeart Counts study on cardiovascular health.
Seems to me ResearchKit might also lower the cost of research. Or maybe I mean it will shift the cost, of data collection at least, to research subjects. MyHeart Counts is at least a free app, but to participate in the research people will have to buy expensive devices like iPhones and Apple Watches and also pay carriers to provide service in perpetuity to send the data to researchers. I concede that the purchases will permit them also to make phone calls, text, do Facebook, play Sudoku, set an alarm, check their stocks, etc. But still.
The other four apps already in existence include mPower, a diagnostic tool for Parkinson’s disease that uses the iPhone touch screen to measure hand tremors and the mic to assess voice tremors. Plus apps for research on asthma, diabetes, and breast-cancer treatment recovery.
Bioethics and ResearchKit
The most extensive take on the research ethics issues that ResearchKit poses comes from an unexpected (to me) source: The Verge. Arielle Duhaime-Ross is concerned, for one thing, about participation by minors without parental consent. She reports that she was able to lie about her age to the Asthma Health app. This apparently is also possible with mPower and the breast cancer app Share the Journey.
The post also explores the obvious issues of privacy and confidentiality. Apple proclaims proudly that it will not see your data, but keeping data anonymous will also be a challenge for the research projects that receive it. One of the researchers admits to Duhaime-Ross up front that there’s no guarantee that a research subject couldn’t be outed.
The Bioethics.com blog is concerned enough about ResearchKit’s bioethical aspects to have posted a link to a Time piece that suggests ethical issues may arise beyond the obvious privacy and confidentiality concerns. For example, will richer institutions be able to attract patients away from trials that might make sense for them but have less funding and can’t provide an app?
At Ars Technica, Jonathan Gitlin thinks the Food and Drug Administration may have something to say about ResearchKit too, although no such potential barrier was mentioned during the Apple festivities launching it. Not every mobile health app is a candidate for regulation, he says, but FDA does have oversight of diagnostic devices, and apps like mPower are offering diagnosis. (And, it strikes me, mPower and its ilk could be a godsend to hypochondriacal obsessives, who will keep pushing the touch screen in search of tremors.)
The International New York Times wonders whether an Apple all day will bring doctors to stay
Not often you see a New York Times piece on science and medicine so thoroughly trashed as the one whose original (and, thanks to intervention by the NYT science department, short-lived) hed read: “Could Wearable Computers Be as Harmful as Cigarettes?”
The science-and-medicine blogosphere roared “NO!”, including the Times‘s own Public Editor Margaret Sullivan (who may, btw, be the best NYT Public Editor ever. She bravely and consistently cuts her employer not much slack.)
The many problems with the piece may well be traceable to the fact that it appeared in the Disruptions blog/column, which runs in the Style section. These departmental divisions are irrelevant to readers, but my hunch is that they may still prevail, hangovers from the dead-tree days, in the editing process.
Meaning that the column, by technology writer Nick Bilton, simply didn’t get the kind of going-over that would have happened in Science or Health. It appears also that Bilton, who may know all there is to know about Silicon Valley, has little background in the squishy and long-disputed medical subjects he tackled here, chiefly the cellphone-as-potential-health-risk saga.
He added insult to that injury by quoting only the infamous (among health writers) Joseph Mercola. “Why is the New York Times turning to Joseph Mercola as an expert on cancer risk?” thundered Kevin Lomangino at HealthNewsReview, pointing out that Mercola is an alternative medicine doctor who believes cancer is caused by root canals.
At Collide-a-Scape, Keith Kloor characterizes Mercola as “an osteopath who is notorious for his many unsubstantiated medical claims, some of which have drawn a warning from the U.S. Food & Drug Administration.” Orac, at Respectful Ignorance, presents great detail and several links about the colorful health advice career of Joe Mercola.
At Risk Science, Andrew Maynard walks you through the evidence on cellphone risk, concluding that a 2011 report from International Agency for Research on Cancer (a WHO body) “found tentative evidence that very high use of cell phones might possibly lead to an increase in the relatively rare conditions glioma, and acoustic neuroma.” Not, in short, at all comparable to health risks from cigarettes.
Maynard then turns to possible danger from the Apple Watch, which was presumably the viral-topic-of-the-moment reason Bilton decided to do his piece. As Maynard points out, watches are different from phones because they are not held near the brain and they don’t emit high-power radio waves. “In other words, there is exactly nothing about a wrist-based wearable that, from the IARC report, would suggest that it could cause cancer. Nothing.”
Decision day for designing future humans
Should we tinker with the genes of our descendants? It’s been a debate topic for half a century or more. Always an intriguing question to mull over in the comfortable absence of good ways of doing it.
Now there are good ways. Gene-editing techniques in particular make it possible to modify the next generation’s genomes, and so future generations as well. In any species. Including Homo sap. These techniques, known as germline modification, are (relatively) cheap and simple. In other species they have also been remarkably effective.
So the discussion is, suddenly, theoretical no more. We know that for sure, because lots of scientists are yelling “STOP!” Or at least “Pause!”
The latest shout comes via this week’s Science (March 20). Attention will be paid because the assembled authors are luminaries. Jennifer Doudna, an inventor of CRISPR, one of the gene-editing methodologies that have bumped this formerly hypothetical question to the top of the ToDo list. David Baltimore, Nobel laureate and former president of Cal Tech. George Church, whose Harvard lab is a hotbed of genetic innovation, including germ line gene editing–the editing of genes in sperm, eggs, and early embryos, changes that will be passed on to future generations. Bioethicists R. Alta Charo and Hank Greely.
And several other notables–including, intriguingly, Paul Berg. A Nobel laureate too, Berg was an organizer of the historic 1975 Asilomar conference, which brought together scores of scientists and a few lawyers to draft guidelines for dealing with the (then) brand-new prospect of being able to directly modify genomes. At that point, the potential risks were unknown.
Asilomar is a fine analogy for what scientists are calling for now. Some kind of summit meeting. Some kind of guidelines. Some kind of policy. And, faint hope, some way of making it apply to labs all over the world.
Recalling what Berg said in a 2008 look back at Asilomar reveals what the new paper is about: “[T]here is a lesson in Asilomar for all of science: the best way to respond to concerns created by emerging knowledge or early-stage technologies is for scientists from publicly-funded institutions to find common cause with the wider public about the best way to regulate — as early as possible. Once scientists from corporations begin to dominate the research enterprise, it will simply be too late.”
In this case, though, scientists from private enterprise are also alarmed, writing last week in Nature to urge a research moratorium. I covered that development, and a lot of background on current efforts at human germline genetic engineering, in my weekly post at the Genetic Literacy Project for last Tuesday (March 17). Scientists in China, it is rumored, have already submitted papers reporting success with modifying the germlines of early human embryos.
Gretchen Vogel describes differences between the commentaries in Nature and Science, and names other concerned scientific groups, in what I think is an open-access piece at Science. She quotes Church on human germ line gene editing, “What is the scenario that we’re actually worried about? That it won’t work well enough? Or that it will work too well?”
Seems pretty obvious to me. Both.