If you are reading this, odds are good that you have an Apple Watch, a Garmin or an Oura Ring to track your sleep or count your steps every day. But have you considered the ethical concerns about the data being collected and who owns it? What seems like a simple step-tracking app raises questions about who truly controls this personal information and has raised ethical concerns about data use, privacy, consent and protection.
These devices, called wearable technology are valuable health tools. They can help people with diabetes manage their blood sugar levels, alert them to irregular heartbeats and more.
“The technology supporting wearables is rapidly advancing -- arguably faster than regulations. In that setting, thinking through the ethical issues is even more important to fill the regulatory gaps and do research ethically, to preserve trust in research,” said Matthew DeCamp, MD, PhD, associate professor in the Center for Bioethics and Humanities and director of Research Ethics for the Colorado Clinical and Translational Sciences Institute (CCTSI).
The ethical issues inherent to the public’s ubiquitous and near-constant self-surveillance drove the topic of this year’s Research Ethics Conference: Research Ethics & Novel Biotechnologies: When Tech is on You, In You, Over You, and More. Held at the Fulginiti Pavilion on November 13, faculty, researchers, staff, students, and nurses attended in person, while more than 80 participants joined via Zoom.
The keynote speaker, James J. Hughes, PhD, associate provost and senior fellow in Philosophy at the University of Massachusetts Boston, presented "Wired for Wellness: The Ethics and Futures of Wearable Self-Surveillance," in which he addressed critical concerns about privacy and data ownership in wearable technology.
"Drawing on public health, AI ethics, and digital governance, I argue that we need to design the next wave of wearables for equity, agency, and the public interest -- not just self-improvement, for-profit efficiency, and social control," Hughes explained.
He emphasized that companies profit billions from our health data, while current U.S. laws don't protect information from fitness apps and wearables. He noted that as wearable device users we should be able to download or share our data as we like, rather than keep it in Big Tech's "walled gardens" that lock that information in their private cloud. Some countries have already taken steps to allow users to download and freely share their information. Moreover, the EU mandates that wearable health data be shareable.
“The most concrete step to take is to pay attention to the agencies that regulate medical devices -- the Food and Drug Administration for instance ... and to stay politically engaged to ensure that those agencies have sufficient resources, regulatory authority and competent staff,” Hughes said.
Beyond corporate control, Hughes explained how wearable data feeds our "digital twins," which can forecast health problems based on our physiology: "Every heartbeat we record feeds a parallel life in data, a digital twin that can learn, age, and predict alongside us and our healthcare team."
This raises fundamental questions such as should insurance costs depend on whether you wear a fitness tracker? Can employers require you to wear one?
While fitness trackers monitor steps and heart rate, some researchers are taking wearable technology to another level. Conference participants heard about research on ingestible electroceuticals, wearable air quality monitors, wastewater surveillance, and even glasses equipped with cameras that snap pictures of everything you eat throughout the day. Janine Higgins, PhD, CCTSI Multiple Principal Investigator, presented at the conference on "A wearable camera to measure dietary intake: creepy or cool?"
These cameras capture the entire process of participants' food preparation and eating, snapping thousands of images daily. The concern? They might snap confidential documents on your kitchen counter or private family moments. Higgins' team recognized these concerns and adjusted the device to capture images only when the individual is chewing, giving participants greater control and privacy over the images being taken.
“Our hope is that attendees would both be able to recognize some of the ethical issues raised by these technologies and to learn new ways of analyzing and managing them,” DeCamp said. “The beauty of our format was that participants heard from researchers across the CCTSI partners -- CU Anschutz, CU Boulder, and CSU -- who had directly experienced these challenges in the real world and shared how they dealt with them.”
Hughes stays optimistic despite these concerns. "The potential harm from these devices remains minimal compared to their benefits." For those considering wearables, Hughes offers practical advice: "Self-tracking with wearables is a way to examine your life, but avoid obsession.”
Looking ahead, Hughes suggested these technologies will continue to advance. "It is inevitable that our descendants will be surrounded by and infused with sensors that will track their bodies and brains to advise about health and many other things." And as healthcare systems enhance in-home capacities with these devices, it will be more important than ever to address product safety, algorithmic bias, and privacy.
For researchers navigating these ethical challenges, the CCTSI Research Ethics Consult Service is available for biomedical and behavioral researchers at CU Anschutz and its clinical affiliates. For more information, contact ResearchEthics@ucdenver.edu.