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Suggested Citation:"Appendix A: Agenda." National Academies of Sciences, Engineering, and Medicine. 2016. Principles and Obstacles for Sharing Data from Environmental Health Research: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/21703.
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A

Agenda

March 19, 2014

Lecture Room

National Academy of Sciences Building

2100 Constitution Avenue, NW

Washington, DC

8:30 a.m. Welcome
Frank Loy, LL.B.
Roundtable Chair
8:40 a.m. Workshop Overview
Lynn Goldman, M.D., M.P.H.
Roundtable Vice-Chair
Dean, Milken Institute School of Public Health
George Washington University
8:50 a.m. Session 1: Brief History and Current Legal and Executive Branch Framework for Data Sharing
Objectives: Federal rule making routinely involves the use of studies in which there are questions raised about how they were prepared and the reliability of the data and the conclusions drawn. Through the Administrative Procedure Act and the process of judicial review, there is now a reasonably well-developed understanding of how agencies handle those problems and what information must be made available to the public, to the Office of Information and Regulatory Affairs of the Office of Management and Budget, and to the courts (if judicial review is sought as it is for most significant rules).

Suggested Citation:"Appendix A: Agenda." National Academies of Sciences, Engineering, and Medicine. 2016. Principles and Obstacles for Sharing Data from Environmental Health Research: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/21703.
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The goal of this session is to inform workshop attendees on the basic ground rules of agency decision making in this area and to set the stage for the panels that follow.
Moderator: Alan Morrison, LL.B., Lerner Family Associate
Dean for Public Interest and Public Service Law, George Washington University
8:50 a.m. Paul R. Verkuil, J.S.D.
Chair, Administrative Conference of the United States
9:10 a.m. George Gray, Ph.D.
Professor
Department of Environmental and Occupational Health
Director of the Center for Risk Science and Public Health
Milken Institute School of Public Health
George Washington University
9:30 a.m. Discussion (20 minutes)
9:50 a.m. Session 2: Benefits and Importance of Data Sharing
Objectives: Most researchers and policy makers in environmental health agree that, as in other fields, research data should be shared as freely as necessary, especially when research data are underpinning regulations. Most also recognize that there need to be some limits on when and how data should be shared.

The goal of this session is to clarify when, why, and how data sharing is beneficial for the researcher, the regulatory agency, the participants, and the public. The session should distinguish between sharing data for reanalysis and sharing data for facilitation of replication.
Suggested Citation:"Appendix A: Agenda." National Academies of Sciences, Engineering, and Medicine. 2016. Principles and Obstacles for Sharing Data from Environmental Health Research: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/21703.
×
Moderator: Gwen Collman, Ph.D., Director, Division of Extramural Research and Training, National Institute of Environmental Health Sciences, National Institutes of Health
9:50 a.m. Panelist Presentations (30 minutes)

Bernard Lo, M.D.
President and CEO
The Greenwall Foundation

Francesca Dominici, Ph.D.
Professor of Biostatistics and Senior Associate Dean for Research
Harvard University School of Public Health

Julia Brody, Ph.D.
Executive Director
Silent Spring Institute

Louis Anthony (Tony) Cox, Jr., Ph.D.
Chief Sciences Officer, NextHealth Technologies
10:20 a.m. Panel Discussion (60 minutes)
11:20 a.m. Session 3: Challenges Associated with Data Sharing
Objectives: While data sharing is quickly becoming the norm, especially for federally funded research, challenges exist for the investigator and her or his institution, the person or entity requesting the data, and the research participants, whose identity can be compromised. Concerns of the investigator are ensuring the right to publication and to quality control over reanalyses.

Suggested Citation:"Appendix A: Agenda." National Academies of Sciences, Engineering, and Medicine. 2016. Principles and Obstacles for Sharing Data from Environmental Health Research: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/21703.
×
The goal of the session is to articulate the potential administrative, ethical, financial, and public health drawbacks to data sharing.
Moderator: Glenn Paulson, Ph.D., Science Adviser, Office of the Administrator, U.S. Environmental Protection Agency
11:20 a.m. Panelist Presentations (30 minutes)

Daniel Barth-Jones, Ph.D., M.P.H.
Assistant Professor of Clinical Epidemiology
Mailman School of Public Health
Columbia University

John Howard, M.D., M.P.H., J.D., LL.M.
Director, National Institute for Occupational Safety and Health

Greg Bond, Ph.D.
Dow Masters Fellowship Program
University of Michigan

Kevin Casey, J.D.
Associate Vice President for Public Affairs and Communications
Harvard University
11:50 a.m. Panel Discussion (60 minutes)
12:50 p.m. Lunch Break (60 minutes)
1:50 p.m. Session 4: Ways Forward—Practices, Technologies, and Tools for Data Sharing
Objectives: As data sharing becomes more common and an accepted practice, tools and best practices need to be identified to ensure the benefits of data sharing and avoid the challenges, as discussed earlier in the program.

Suggested Citation:"Appendix A: Agenda." National Academies of Sciences, Engineering, and Medicine. 2016. Principles and Obstacles for Sharing Data from Environmental Health Research: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/21703.
×
The goal of this session is to identify principles, practices, and programs that could be used more widely for maximizing data sharing.
Moderator: Lynn Goldman, M.D., M.P.H., Roundtable Vice-Chair
1:50 p.m. Panelist Presentations (30 minutes)

Edward Sondik, Ph.D.
Former Director
National Center for Health Statistics
Centers for Disease Control and Prevention

Daniel Greenbaum, M.S.
President
Health Effects Institute

Linda S. Birnbaum, Ph.D., DABT, ATS
Director
National Institute of Environmental Health Sciences
National Institutes of Health

George Daston, Ph.D.
Victor Mills Society Research Fellow
Procter & Gamble
2:20 p.m. Panel Discussion (60 minutes)
3:20 p.m. Break (20 minutes)
3:40 p.m. Session 5: Reflections on the Workshop and Concluding Remarks
Objective: The objective of this session is to have reflections on the day, including next steps, from experts with different perspectives.
Moderator: Frank Loy, LL.B., Roundtable Chair
Suggested Citation:"Appendix A: Agenda." National Academies of Sciences, Engineering, and Medicine. 2016. Principles and Obstacles for Sharing Data from Environmental Health Research: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/21703.
×
3:40 p.m. Linda S. Birnbaum, Ph.D., DABT, ATS
Director
National Institute of Environmental Health Sciences
National Institutes of Health
3:50 p.m. Jerry Blancato, Ph.D.
Director
Office of Science and Information Management
Office of Research and Development
U.S. Environmental Protection Agency
4:00 p.m. Joseph Rodricks, Ph.D., DABT
Principal, ENVIRON
4:10 p.m. Ellen Silbergeld, Ph.D.
Editor in Chief
Environmental Research
Professor
Johns Hopkins Bloomberg School of Public Health
4:20 p.m. Latanya Sweeney, Ph.D.
Professor of Government and Technology in Residence
Harvard University
4:30 p.m. Discussion (30 minutes)
5:00 p.m. Closing Remarks and Adjourn
Suggested Citation:"Appendix A: Agenda." National Academies of Sciences, Engineering, and Medicine. 2016. Principles and Obstacles for Sharing Data from Environmental Health Research: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/21703.
×
Page 83
Suggested Citation:"Appendix A: Agenda." National Academies of Sciences, Engineering, and Medicine. 2016. Principles and Obstacles for Sharing Data from Environmental Health Research: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/21703.
×
Page 84
Suggested Citation:"Appendix A: Agenda." National Academies of Sciences, Engineering, and Medicine. 2016. Principles and Obstacles for Sharing Data from Environmental Health Research: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/21703.
×
Page 85
Suggested Citation:"Appendix A: Agenda." National Academies of Sciences, Engineering, and Medicine. 2016. Principles and Obstacles for Sharing Data from Environmental Health Research: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/21703.
×
Page 86
Suggested Citation:"Appendix A: Agenda." National Academies of Sciences, Engineering, and Medicine. 2016. Principles and Obstacles for Sharing Data from Environmental Health Research: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/21703.
×
Page 87
Suggested Citation:"Appendix A: Agenda." National Academies of Sciences, Engineering, and Medicine. 2016. Principles and Obstacles for Sharing Data from Environmental Health Research: Workshop Summary. Washington, DC: The National Academies Press. doi: 10.17226/21703.
×
Page 88
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On March 19, 2014, the National Academies of Sciences, Engineering, and Medicine held a workshop on the topic of the sharing of data from environmental health research. Experts in the field of environmental health agree that there are benefits to sharing research data, but questions remain regarding how to effectively make these data available. The sharing of data derived from human subjects--making them both transparent and accessible to others--raises a host of ethical, scientific, and process questions that are not always present in other areas of science, such as physics, geology, or chemistry. The workshop participants explored key concerns, principles, and obstacles to the responsible sharing of data used in support of environmental health research and policy making while focusing on protecting the privacy of human subjects and addressing the concerns of the research community. Principles and Obstacles for Sharing Data from Environmental Health Research summarizes the presentations and discussions from the workshop.

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