Ethical, Legal and Social Implications of Citizen Science
Trans-NIH Workshop to Explore the Ethical, Legal and Social Implications (ELSI) of Citizen Science
National Institutes of Health
Fishers Lane Terrace-Level Conference Center
Purpose: Citizen Science is an approach to research that involves the public directly in the research process itself as partners and collaborators. The purpose of this workshop is to identify the ELSI challenges raised by Citizen Science in the context of biomedical research and identify ways for the National Institutes of Health (NIH) to address these ELSI issues.
The term "biomedical" is used in the broadest sense to include a wide range of research related to the NIH mission: biological, biomedical, behavioral, social, environmental and clinical studies that relate to understanding health and disease.
NIH Citizen Science ELSI Subgroup Workshop (Meeting Planners): Charlisse Caga-anan (NCI), Dave Kaufman (NHGRI), Katrina Theisz (NCI), Steven Becker (NEI), Elaine Collier (NCATS), Jennifer Couch (NCI), Leslie Derr (OD), Symma Finn (NIEHS), Elizabeth Gillanders (NCI), Megan Kinnane (NIMH), Jean McEwen (NHGRI), Gabriel Rosenfeld (NIAID), Amanda Vogel (NCI) and Carol Weil (NCI).
- To identify prominent ELSI issues associated with various types of Citizen Science research projects (for consideration by NIH policymakers and for use by investigators leading such projects).
- To identify gaps in ELSI research on Citizen Science relevant to NIH's mission.
- To plan for continued, expanded engagement of Citizen Science and bioethics communities to further develop criteria and guidance for NIH Citizen Science research activities.
Session 1. Welcome, Landscape of Citizen Science at NIH, and Introduction to ELSI Issues
Welcome and charge/workshop goals
Lay of the land for Citizen Science at NIH
Participant Introductions (Five rounds of paired discussion - 10 minutes total)
Overview of Citizen Science methodologies
Initial elicitation and discussion of ELSI issues
Sandra Soo-Jin Lee, Ph.D.
Professor of Medical Humanities and Ethics Columbia University
Session 2. Building the Relationship: Citizen and Community Engagement in the Development of Research Projects
- • Mildred Cho, Stanford University (Moderator)
- • Nick Anderson, UC Davis
- • Sally Okun, Patients Like Me
- • Holly Peay, Parent Project Muscular Dystrophy
- • Elizabeth Yeampierre, UPROSE
Session 2 Discussion Panel
Session 3. Planning the Study: ELSI Issues in Study Design and Governance
- • Sara Hull, NHGRI (Moderator)
- • Deborah Collyar, Patient Advocates in Research (PAIR)
- • Sarah Greene, PCORI
- • John Wilbanks, SAGE Bionetworks
- • Pearl O’Rourke, Board Chairman of PRIM&R, Harvard/Partners
- • Effy Vayena, University of Zurich
Session 3 Discussion Panel
Sara Chandros Hull, Ph.D.
Deputy Director Office of the Scientific Director
Session 4. Conducting the Study: ELSI Issues in Data Collection and Analysis
- • Deven McGraw, Manatt, Phelps & Phillips, LLP (Moderator)
- • Jason Bobe, The Personal Genome
- • Steve Wing, UNC-Chapel Hill
- • Jennifer Fishman, McGill University
Session 4 Discussion Panel
Day 1 Closing Remarks
Kelly Edwards, University of Washington
Day 2 Introduction
Session 5. After the Study: Roles and Responsibilities for Citizen Scientists/Researchers Once the Research Has Concluded
- • Sharon Terry, Genetic Alliance (Moderator)
- • Julia Brody, Silent Spring Institute
- • Laura Cleveland, Patient Advocate
- • Denise Dillard, Southcentral Foundation
- • Sacoby Wilson, University of Maryland
Session 6. Putting It All Together
Recommendations for ELSI Points to Consider in Conducting Citizen Science Research (12:30 to 1:45 PM)
- • Moderator: Kelly Edwards, University of Washington
Identifying Gaps in ELSI Research on Citizen Science (1:45 to 3:00 PM)
- • Moderator: Jeff Kahn, Johns Hopkins University
Session 6: Think-Pair-Share
Day 2 Concluding Remarks
Last updated: March 13, 2015