NHGRI logo

Ethical, Legal and Social Implications of Citizen Science

Event Details

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

map of 5635 Fisher Lane Rockville, MD


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).

Workshop Goals:

  1. 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).
  2. To identify gaps in ELSI research on Citizen Science relevant to NIH's mission.
  3. To plan for continued, expanded engagement of Citizen Science and bioethics communities to further develop criteria and guidance for NIH Citizen Science research activities.


YouTube icon Video Playlist
Tweets from the Workshop: #CitSciELSI PDF icon
Printable Agenda PDF icon

Day 1 Introduction

Registration and Networking

Session 1

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

Dave Kaufman, Ph.D.

Dave Kaufman, Ph.D.

Program Director Division of Genomics and Society

generic profile image

Charlisse Caga-anan

generic profile image

Jennifer Couch

generic profile image

Elizabeth Gillanders

generic profile image

Pietro Michelucci

Sandra Soo-Jin Lee

Sandra Soo-Jin Lee, Ph.D.

Professor of Medical Humanities and Ethics Columbia University

generic profile image

Kelly Edwards


Session 2

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

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
  • Think-Pair-Share
Sara Hull

Sara Chandros Hull, Ph.D.

Deputy Director NIH IRB Internship Program


Session 4

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

Dave Kaufman, Ph.D.

Dave Kaufman, Ph.D.

Program Director Division of Genomics and Society


Session 5

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


World Café

3 rounds, 25 minutes per round


Session 6

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