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NIH

Trans-NIH Workshop to Explore the Ethical, Legal and Social Implications (ELSI) of Citizen Science

AgendaCitizen Science

January 13-14, 2015

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.

Tweets from the Workshop: #CitSciELSI PDF file
Printable Agenda PDF file

View videos and slides from January 13 January 14

Tuesday, January 13, 2015

Number Topic and Speaker(s) Speaker(s)
1 Welcome and charge/workshop goals
YouTube video Video | Slides PDF file
Dave Kaufman
National Human Genome Research Institute (NHGRI)

Charlisse Caga-anan
National Cancer Institute (NCI)

2 Lay of the land for Citizen Science at NIH
YouTube video Video
Jennifer Couch
NCI
3 Overview of Citizen Science Methodologies
YouTube video Video
Pietro Michelucci
Human Computation Institute
4 Initial elicitation and discussion of ELSI issues
YouTube video Video | Slides PDF file
Sandra Soo-Jin Lee
Stanford University
5 Initial elicitation and discussion of ELSI issues
YouTube video Video
Kelly Edwards
University of Washington
6 - 10 Session 2: Building the Relationship: Citizen and Community Engagement in the Development of Research Projects
YouTube video Video (Cho)

YouTube video Video (Peay)

YouTube video Video (Yeampierre)

YouTube video Video (Anderson)

YouTube video Video (Okun)
Mildred Cho (Moderator)
Stanford University

Holly Peay
Parent Project Muscular Dystrophy

Elizabeth Yeampierre
United Puertorican Organization of Sunset Park (UPROS)

Nick Anderson
University of California, Davis

Sally Okun
Patients Like Me
11 Session 2 Discussion Panel
YouTube video Video
12-17 SESSION 3: Planning the Study: ELSI Issues in Study Design and Governance
YouTube video Video (Hull)

YouTube video Video | Slides PDF file (Greene)

YouTube video Video (Wilbanks)

YouTube video Video (O'Rourke)

YouTube video Video | Slides PDF file (Collyar)

YouTube video Video (Vayena)
Sara Hull (Moderator)
NHGRI

Sarah Greene
Patient-Centered Outcomes Research Institute (PCORI)

John Wilbanks
Sage Bionetworks

Pearl O'Rourke
Board Chairman of Public Responsibility in Medicine and Research (PRIM&R), Harvard/Partners

Deborah Collyar
Patient Advocates in Research (PAIR)

Effy Vayena
University of Zurich
18 Session 3 Discussion Panel
YouTube video Video
19-21 SESSION 4: Conducting the Study: ELSI Issues in Data Collection and Analysis
YouTube video Video | Slides PDF file (Bobe)

YouTube video Video | Slides PDF file (Wing)

YouTube video Video | Slides PDF file (Fishman)
Jason Bobe
The Personal Genome

Steven Wing
University of North Carolina at Chapel Hill

Jennifer Fishman
McGille University
22 Session 4 Discussion Panel
YouTube video Video
23 Closing Remarks - Day 1
YouTube video Video
Kelly Edwards
University of Washington

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Wednesday, January 14, 2015

Number Topic Speaker(s)
24 Introduction - Day 2
YouTube video Video
Dave Kaufman
National Human Genome Research Institute (NHGRI)
25-29 SESSION 5: After the Study: Roles and Responsibilities for Citizen Scientists/Researchers Once the Research Has Concluded
YouTube video Video (Terry)

YouTube video Video | Slides PDF file(Brody)

YouTube video Video (Cleveland)

YouTube video Video | Slides PDF file(Dillard)

YouTube video Video (Wilson)
Sharon Terry (Moderator)
Genetic Alliance

Julia Brody
Silent Spring Institute

Laura Cleveland
Patient Advocate Research

Denise Dillard
Southcentral Foundation

Sacoby Wilson
University of Maryland

30 Session 5 Discussion Panel
YouTube video Video
31 Session 6: Recommendations for ELSI Points to Consider in Conducting Citizen Science Research - Intro
YouTube video Video
Kelly Edwards
University of Washington
32 Session 6: Recommendations for ELSI Points to Consider in Conducting Citizen Science Research - I
YouTube video Video
Dave Kaufman
NHGRI
33 Session 6: Recommendations for ELSI Points to Consider in Conducting Citizen Science Research - II
YouTube video Video
Kelly Edwards
University of Washington
34 Session 6: Identifying Gaps in ELSI Research
YouTube video Video
Jeff Kahn
Johns Hopkins Unviersity
35 Concluding Remarks - Day 2
YouTube video Video
Kelly Edwards
University of Washington

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Last Updated: March 13, 2015