Camille Nebeker: Informed Consent, Self-Consent

Camille Nebeker, assistant professor of Family Medicine and Public Health at UC San Diego, at the Quantified Self Symposium .

Part of the results of the Blood Testers experiment will be a checklist to help people doing self-study or group self-study think through what they need to know to make a decision to opt in. — Camille Nebeker

Camille Nebeker is a research ethicist helping redefine ethical frameworks for participant-led research. Building from a multi-year discussion in the QS Public Health community about the role of Institutional Review Boards in participatory research, Camille’s talk proposes a new approach for ethical evaluation appropriate for these novel projects.

Camille Nebeker presenting a continuum from traditional academic research to participant-led research.

Highlights from the QS Symposium 2018

Introduction to the Quantified Self Symposium 2018

Reza Mirza: The History and Future of Single-Subject Science

Hugo Campos: 10 Years With An Implantable Cardiac Device, Still No Data Access

Jana Beck: Carb Intake and 60 Lipid Measurements

Azure Grant: Lessons from Blood Testers, a Participant-Led Project

Dorothy D. Sears: Circadian Rhythms and Cardiometabolic Health

Carsten Skarke: Characterizing the Chronobiome with “Supertrackers”

Whitney E. Boesel: Cholesterol Variability Across Postpartum Menstrual Cycles

Xiao Li: Finding the Signal in Rich Self-Collected Data

Katherine Kim: What Counts as Clinical Data? Incorporating Self-Collected Observations into CVD Research

Jeffrey Olgin: Data Aggregation for N-of-1 to “N-of-Many-Ones”

Dana Lewis: Social Infrastructure for Participant-Led Research

Boomer Anderson, Marcel van der Kuil: Participant Perspectives on Regulation of Participant-Led Research

Camille Nebeker: Informed Consent, Self-Consent

Steven Steinhubl: Where “All of Us” Meets All of Us

Sunita Vohra: What N-of-1 Can Do

Benjamin Smarr: Changing the Definition of Baseline

Maggie Delano: The Case for Open Instrumentation