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Reflecting on Ethical Dimensions of Participant-Led Research

A Webinar from CSA's Ethics Working Group, presented by Camille Nebeker (UC San Diego) and Gary Wolf (Quantified Self)

Participant-led research (PLR) is a rapidly developing form of citizen science in which individuals can create personal and generalizable knowledge - typically in the health domain. Although PLR lacks a formal framework for ethical review, ethical issues should not be neglected. This webinar will describe how a PLR cohort consisting of 24 self-trackers: (1) provided structured approaches to ethical reflection before and throughout their study and (2) drafted principles to encourage further development of the governance and ethical review of PLR.

This webinar provides an example why it's important to create processes to promote reflection and conversations about the ethical dimensions of PLR - especially when a formal external ethics review isn't required.  How to initiate discussions about potential study risks and benefits is important at the beginning as well as over the course of conducting a PLR study. During this webinar,  we will talk about how we did this and present a checklist that was informed by the group. The 9-item checklist prompts discussion about, for example, transparency, access to experts and data management and is a tool for promoting trust among the cohort.

Presented by: Camille Nebeker, EdD, MS | Assistant Professor | Founder/Director, Research Center for Optimal Digital Ethics - Health (ReCODE Health) | Department of Family Medicine & Public Health | School of Medicine | UC San Diego,
and Gary Wolf, Co-founder Quantified Self and Director of Quantified Self Lab





CSA WEBINAR- Reflecting on Ethical Dimensions of Participant-Led Research

  • Thursday June 20 2019, 1:00 PM - 2:00 PM
  • Online
    Times provided are US EST (UTC -5)