That wearable fitness device on your wrist is measuring so much more than your exercise levels. Digital tools offer unprecedented opportunities in health research and healthcare but it can come at the cost of privacy. Six days of step counts are enough to identify you among a million other people – and the type of inferences that can be made from other everyday behaviors is growing rapidly.
Camille Nebeker, EdD, MS is Associate Professor of Behavioral Medicine in the Department of Family Medicine & Public Health at the UC San Diego School of Medicine. She discusses the ethical considerations of informed consent and potential harms and benefits of these technologies. She also shares ideas on how we can work together to create systems that define and encourage safe digital health research and practice.
Watch — The Digital Revolution: Ethical Implications for Research on Healthy Aging
Our life-spans are ever-increasing, but our health-spans are not, leading to long periods of unpleasant and expensive suffering with chronic conditions. Many of these conditions have recently been linked to the microbiome. We are constantly shaping our microbiomes through the foods we eat, the environments we experience, even the people we live and work with.
Through the American Gut Project, the largest crowdsourced and crowdfunded citizen-science project yet conducted, we now know about the microbiomes of many types of people, from the healthiest to the sickest. Potentially real-time analysis of our microbiomes could guide our daily decisions in a way that optimizes our microbiomes for extending our health-span. Although the potential benefits of such research are clear, what are the risks (e.g., privacy concerns) that need to be identified and addressed?
Rob Knight is Professor of Pediatrics, Bioengineering and Computer Science & Engineering and is Director of the Center for Microbiome Innovation at UC San Diego. He authored “Follow Your Gut: The Enormous Impact of Tiny Microbes” and co-authored “Dirt is Good: The Advantage of Germs for Your Child’s Developing Immune System.” His work combines microbiology, DNA sequencing, ecology and computer science to understand the vast numbers of microbes that inhabit our bodies and our planet. He was recently honored with the 2017 Massry Prize for his microbiome research.
Watch Shaping Our Dynamic Microbiomes For Lifelong Health – Exploring Ethics