Skip to main content
The VergeThe Verge logo.The Verge homepage
The VergeThe Verge logo.

New ResearchKit update allows developers to upload patients' genetic data

New ResearchKit update allows developers to upload patients' genetic data

/

The module was created by genetic testing company 23andMe

By Loren Grush

Source 23andMe

|

Share this story

Genetic testing company 23andMe has created a new tool to help researchers using Apple’s ResearchKit integrate genetic information. Soon, ResearchKit developers can use the new module to upload the genetic data of participants who have had their genomes sequenced through 23andMe, the company said.

"This will enable research on a much broader scale," 23andME CEO Anne Wojcicki said in a press release. "Incorporating genetics into a platform with the reach of ResearchKit will accelerate insights into illness and disease even further."

Apple launched ResearchKit, an open source software platform, last year as a way for researchers to recruit iOS users to be participants in studies. When some experts questioned how the app approached consent and privacy, Apple took steps to address their concerns. A month after the launch, Apple announced that each app developed through ResearchKit would go through an independent ethics board, a move that created more support for the program. Research institutions using the new 23andMe module will also have to get approval from an ethics board, according to an Apple representative. As for how Apple plans to ensure customer privacy, a company representative referred us to the policies for CareKit and ResearchKit.

Mount Sinai and Stanford Medicine will be the first to use the new tool

Mount Sinai and Stanford Medicine will be the first ResearchKit developers to use the new 23andMe tool, which will be available later this month. Mount Sinai's Asthma Health app tracks the symptoms of more than 8,800 iOS users with asthma to determine potential triggers of attacks. Stanford's MyHeart Counts app follows the physical activity of 50,000 iOS users to figure out ways to prevent heart disease. Any 23andMe customers involved in these two studies can upload their genetic data to the apps after giving informed consent.

The new module will also open up ways for non-23andMe customers to contribute their genetic information. ResearchKit developers can choose to offer 23andMe's genome sequencing services through the module; the costs of the testing would then be covered by the researchers themselves.

23andMe analyzes customers' genetic information using samples of saliva. Originally, the company claimed it could identify up to 254 genetic-based diseases from these saliva samples. But in 2013, the Food and Drug Administration banned 23andMe from offering health data to customers until the company could prove that its tests were accurate. The FDA partially lifted the ban in October 2015, allowing the company to inform customers about their risk of passing on 36 diseases and conditions.

Apple launched ResearchKit, an open source software platform, last year as a way for researchers to recruit iOS users to be participants in studies. Though some experts questioned how the app approached consent and privacy, Apple took steps to address their concerns. A month after the launch, Apple announced that each app developed through ResearchKit would go through an independent ethics board, a move that created more support for the program. Research institutions using the new 23andMe module will also have to get approval from an ethics board, according to an Apple representative. As for how Apple plans to ensure customer privacy, a company representative referred us to the policy for ResearchKit.

Update March 21st, 7:48PM ET: The article was updated to include info about privacy and ethics surrounding the new module.

More from Apple