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Rewriting Life

23andMe to Share DNA Data with Researchers Using Apple iPhone

Consumers with iPhones can click to contribute their genetic information to medical studies.

The consumer genetics company 23andMe plans to let its customers use their iPhones to share their genetic data with researchers carrying out medical studies.

The plan will allow university researchers to access DNA profiles collected by the Google-backed company and pair them with health-related data currently being collected on participants’ phones.

The tie-up, expected to be announced today in connection with an Apple product event in Cupertino, California, involves Stanford University, the Icahn School of Medicine at Mount Sinai in New York, and an app developer named LifeMap Solutions, according to people familiar with the plans. It is part of a widening effort by tech companies and scientists to reinvent how medical studies are carried out by encouraging wider sharing of health information.

Eventually, consumers may simply “swipe” to share their genetic data as easily they do their location or contact list. For now, it’s a little more complicated. All the DNA data is located on 23andMe’s servers, not on people’s phones. It would be shared, on a case-by-case basis, directly with research groups, but only if volunteers click through a consent process.

One of the iPhone-based studies, MyHeart Counts, was launched last year by the Stanford University School of Medicine and has enrolled 50,000 people. It is “one of the largest cardiovascular research trials ever conducted,” according to the school. It asks people to fill out survey questions, including one that asks how happy they are, then uses the phone’s accelerometer to track how much they walk, run, or stay still during one week.

Euan Ashley, a Stanford geneticist, says that by adding DNA data from volunteers, the team hopes to discover “the genetic determinants of exercise,” or whether genes figure into a person’s decision to go for a jog or lift some weights.

“We know there is no more important intervention for health than exercise,” says Ashley, “but we don’t know how to prescribe it.” Ashley says the next phase of the study will also test “digital” interventions, like how to prompt people to get off the couch.

23andMe did not respond to an e-mail inquiry about the effort.

The other iPhone study that will accept DNA data collected by 23andMe is Asthma Health, run by Yvonne Chan, director of personalized medicine and digital health at the Icahn School of Medicine. It asks asthmatics to log their symptoms, medication use, and physical activity and the location of their attacks.

Both studies employ a software framework called ResearchKit that Apple launched in March of 2015, which made it easier to design phone studies. It did so in particular by simplifying the process of obtaining informed consent, or ensuring that participants are aware of risks such as accidental disclosure that they have a disease.

There are at least 20 ResearchKit studies under way, according to an Apple spokesperson, including a melanoma “mole mapper,” one on the health effects of energy drinks, and a population study of gay, lesbian, and transgender people.

MIT Technology Review first reported last year on Apple’s interest in seeing gene data added to the studies.

Apple executives were involved in expanding that consent process to include DNA, but the company isn’t directly responsible for the apps and won’t store or access DNA information itself. Instead, the information will be exchanged directly between 23andMe’s servers, where it is permanently stored, and those at the universities.

Adding a DNA component to the studies could be greatly simplified by 23andMe, which already stores genetic data on over one million people and has previously sold access to drug companies, like Genentech, that want to carry out gene research.

The two university studies will now ask participants if they want to let researchers to see their 23andMe DNA data. Those who haven’t signed up will be given an option to buy the test, which lists for $199 and provides a high-level overview of a person’s genetic makeup.

Apple and the Federal Bureau of Investigation have been sparring over access to data on iPhones, and DNA data raises related concerns. Last week, 23andMe said it had resisted four requests from law enforcement to access customers’ DNA in order to search for matches with crime-scene evidence.

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