DMC Bytes - Digital Phenotype

 Digital phenotyping and sensitive health data: Implications for data governance 

JAMA (Subscription Required)
Ignacio Perez-Pozuelo, Dimitris Spathis, et al. 

This is a very thoughtful article about the implications of the growing collection, processing, storage and use of data collected through mobile and wearable devices to create a “digital phenotype” of individuals. The definition quoted by the authors is: 

“…moment-by-moment quantification of the individual-level human phenotype using data from personal digital devices.” 

The authors reference significant opportunities for research using these data - and the drive by technology providers to collect, analyze, share and monetize data produced by people using consumer electronics. The data from electronic sensors, wellness apps, and other lifestyle applications are not typically covered by medical research ethics and regulations covering privacy and secondary use of data. As noted by the authors: 

“A broad range of harms related to the collection of health data online has been highlighted in the academic and policy literature, including unethical data collection and provision of inaccurate clinically relevant data. As digital phenotyping becomes more prevalent and is used by commercial providers of other services, or to generate diagnoses, there is also the potential for discriminatory use of sensitive data, such as exclusionary insurance, employment discrimination, or unfair credit scoring.” 

The article uses lessons from genetics to assess the risks of digital phenotyping and draws comparisons between genotyping individuals and creating a digital phenotype. Once the sensors, applications and devices are developed and used by consumers, data can be collected and aggregated at minimal additional cost and with limited awareness of the individuals generating the data. Of course, these data could, if collected and used appropriately, also provide opportunities for research on physical, cognitive and other physiologic and behavioral conditions. 

I encourage you to read the article. The authors outline ideas for privacy protections, “dynamic consent” and other elements of a regulatory approach to protect people while facilitating the use of these data for important research. 

What do you think? 

I wear an Apple Watch, Amazon Halo band, have a Bluetooth enabled blood pressure cuff and scale, workout on a MatrixID-equipped elliptical, use one mobile app to track my nutrition status and another to keep track of my strength-training workouts…and I am sure that I missed a couple of other data-generating applications.  

Should I disconnect?
Have you disconnected?
What do you do to protect your privacy?