Consultation for Collective Action on Personalized Health Technology: Eliminating Ethical, Legal, and Social Barriers for Individual and Societal Benefit

Abstract

The ubiquity and use of smartphones, sensors, devices, and wearables that monitor, diagnose, and improve health behaviors is exploding. We track our health habits by strapping wearables to our wrists, attaching patches to our skin, and even ingesting sensing pills that transmit signals to our health care providers (Topol, Steinhubl, & Torkamani, 2015). Deluges of data are analyzed for insights at lightning speed. These personalized health technologies (PHTs) produce completely new categories of data that make precision medicine both a reality and potentially cost-effective. The voluminous data trails these smartphones, sensors, devices, and wearables leave behind also open new doors for misuse and harm by well-intentioned innovators and malevolent characters. Innovation of PHT is several laps ahead of ethical, legal, and social (ELS) considerations that are needed to allay legitimate concerns of prospective users and their health care providers. Is this personal health data accurate, reliable, and trustworthy? Is it wise to share publically on social networks or privately with health care providers? Are companies reusing the data for marketing or advertising purposes? Is it protected from cybercriminals? Uncertainty in these areas may limit the quality, acceptability, uptake, and potentially revolutionary benefits of PHT. Collective action by varied stakeholders is needed to eliminate ELS barriers of PHT use for individual and societal benefit.