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Your Environment. Your Health.

Data Sharing Strategies for Environmental Health Science Research Workshop

Two outlined figures and a DNA chain superimposed on an image of the earth

February 6-7, 2012
EPA Main Building, Auditorium
109 T.W. Alexander Drive
Durham, NC 27711

 

Meeting Description

This meeting will gather information and recommendations from the environmental health science research community and other experts regarding successful approaches and strategies that allow broad data sharing in the field of environmental health sciences in human population studies. NIEHS is particularly interested in what unique considerations exist for data sharing for studies with environmental exposure data and what challenges or barriers exist for researchers wishing to more broadly share their data with others. Some of the key issues that will be addressed in this meeting include protection of privacy/confidentiality, legal, social, and ethical considerations, and policy implications. Minimal data requirements desired for drafting a general data sharing policy at NIEHS will also be explored.

 

See the full meeting report: Data Sharing Strategies for Environmental Health Science Meeting Report(245KB)

 

Meeting Agenda

 

Session I: Introduction and Overview

Opening Remarks
Linda Birnbaum, Director, National Institute of Environmental Health Sciences and National Toxicology Program

Workshop Purpose and Goals(220KB)
Gwen Collman, Director, Division of Extramural Research & Training, National Institute of Environmental Health Sciences

Background of Data Sharing Efforts and Summary of Request for Information (RFI) Results(407KB)
Kim McAllister, Program Administrator, National Institute of Environmental Health Sciences

Why Share Environmental Health Science Data?
Bruce Lanphear, Professor of Children’s Environmental Health, BC Children’s Hospital, Simon Fraser University

 

Session II: Legal and Policy Considerations of Data Sharing

Data Sharing: Taking Research Further(503KB)
J.P. Kim, Director and Policy Officer, DEITR/OPERA/Office of Extramural Research, NIH

Sharing Genomic Data: NIH Policies Past, Present, and Future(2MB) NIH Policies Past, Present, and Future
Laura Lyman Rodriguez, Director, Office of Policy, Communications and Education, National Human Genome Research Institute

 

Session III: Ethical Concerns

Ripple Effects of Data Sharing: Ethical Concerns(760KB)
Richard Sharp, Director, Bioethics Research, Cleveland Clinic

Examples from the Field(1MB)
Julia Brody, Executive Director, Silent Spring Institute

Data Sharing in Broader Context(173KB)
Wael Al-Delaimy, Chief, Global Health, UC San Diego

 

Session IV: Environmental Health Sciences Data Sharing Strategies

Panel Discussion(234KB) with:
Stephanie London, Principal Investigator, Genetic Epidemiology, NIEHS
Howard L. McLeod, Director, Institute for Pharmacogenomics and Individualized Therapy, UNC
Jeff Murray, Department of Pediatrics, University of Iowa
Brad Racette, Professor, Neurology, Washington University
Dale Sandler, Principal Investigator and Chief, Epidemiology Branch, NIEHS
Shanna Swan, Vice Chair for Research, Department of Preventive Medicine, Mount Sinai Hospital
Stanley Young, National Institute of Statistical Sciences

 

Session V: Implementation of Data Sharing Strategies

Are You Ready for Data Sharing? Lessons Learned from the Fernald Community Cohort(3MB)
Susan Pinney, Associate Professor, Department of Environmental Health, University of Cincinnati College of Medicine

The PhenX Toolkit – Make Data Sharing Easier(2MB)
Carol Hamilton, Principal Investigator, PhenX, Director, Bioinformatics, RTI International

The National Database for Autism Research_508(947KB)
Greg Farber, Director, Office of Technology Development and Coordination, NIMH, NIH

Sharing Data via Established Policies and Procedures in NHLBI Cardiovascular Cohort Studies: Lessons from MESA for Environmental Health Research(2MB)
Joel Kaufman, Professor, Environmental and Occupational Health Sciences, University of Washington

Data Sharing in an Integrated Health Delivery System(359KB)
Stephen Van Den Eeden, Kaiser Permanente Northern California

Models for 'Sharing' Research Data: A Data Coordinating Center Perspective
Howard Andrews, Director, Data Coordinating Center, Columbia Center for Children’s Environmental Health, Columbia University

 

Session VI: Summary and Recommendations

General Discussion
Cindy Lawler, Program Director, NIEHS

 

Goals and Objectives

The purpose of this meeting is to gather information and recommendations from the environmental health science research community and others regarding best strategies that allow broad data sharing in the field of environmental health sciences in human population studies. NIEHS recognizes that environmental health science research is becoming increasingly complex and multidisciplinary. Therefore, the broad sharing of data generated from epidemiological studies is highly desirable to leverage the NIH investment in these studies and advance the field of environmental health sciences as a whole. These recommendations along with the recommendations from an accompanying RFI (request for information), entitled “Input on Strategies to Encourage Broad Dating Sharing in Environmental Health Sciences Research”, will be considered by NIEHS for implementing a draft general data sharing policy.

 

Summary Report of RFI Responses to Data Sharing Strategies in Environmental Health Sciences Research(76KB)

 

Selected Data Sharing References(89KB)

 

Contacts

Kimberly A. McAllister, Ph.D.
Health Scientist Administrator
Tel (919) 541-4528
Fax (919) 316-4606
mcallis2@niehs.nih.gov
Jennifer Collins
Program Analyst
Tel (919) 541-0117
collins6@niehs.nih.gov
Kerri Moran
Contractor
Tel (919) 794-4710
kerri.moran@nih.gov

 

ADA Accommodations Requests

Individuals with disabilities who need accommodation to participate in this event should contact Kerri Moran at 919-794-4710 or kerri.moran@nih.gov. TTY users should contact the Federal TTY Relay Service at 800-877-8339. Requests should be made at least 5 business days in advance of the event.

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