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1 Introduction On March 19, 2014, the Roundtable on Environmental Health Sciences, Research, and Medicine in conjunction with the Committee on Science, Technology, and the Law, both of 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 subjectsâ making them both transparent and accessible to othersâraises a host of ethical, scientific, and process questions that are not always present in other areas of science, such as physics, geology, or chemistry. Through presentations from invited speakers and discussions among all attendees, 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. The workshop statement of task is provided in Box 1-1.1 The following is a summary and synthesis of the presentations and discussions that took place during the workshop. When reading the summary, it is important for the reader to keep in mind that the opinions 1 The planning committeeâs role was limited to planning the workshop, and the workshop summary has been prepared by the workshop rapporteurs as a factual summary of what occurred at the workshop. The statements, recommendations, and opinions expressed are those of individual presenters and participants, and are not necessarily endorsed or verified by the National Academies of Sciences, Engineering, and Medicine, and they should not be construed as reflecting any group consensus. 1
2 PRINCIPLES AND OBSTACLES FOR SHARING DATA BOX 1-1 Statement of Task An ad hoc committee will plan and conduct a public workshop featuring presentations and discussions to outline key concerns, principles, and prototype programs or best practices in fostering the responsible sharing of research used in environmental policy making while protecting the privacy of human subjects and addressing concerns of the research community. The committee will identify the specific topics to be addressed, develop the agenda, select and invite speakers and other participants, and moderate the discussions. A full- length workshop summary and a brief workshop summary will be prepared by a designated rapporteur in accordance with institutional policies and procedures. expressed and any recommendations made are those of the individual speakers themselves and do not represent the position of the National Academies. Indeed, the purpose of the Roundtable on Environmental Health Sciences, Research, and Medicine is to provide a mechanism for interested parties in environmental health to meet and discuss sensitive and difficult environmental issues in a neutral setting. The Roundtable fosters dialogue about these issues, but it does not provide recommendations or try to find a consensus on these issues. ORGANIZATION OF THE SUMMARY The organization of this summary deviates somewhat from the structure of the workshop agenda. Specific comments made by speakers during some discussion sessions and some presentations have been regrouped to reflect overarching discussion topics, regardless of when they occurred throughout the day. When such deviations occur, they are noted. Chapter 2 introduces the terminology and the federal laws and policies that were presented in Session 1 of the workshop, as well as some presentations on current approaches to data sharing and the weaknesses of those approaches described throughout the workshop. Chapter 3 recaps the presentations that focused on the benefits of data sharing and the related discussions. Chapter 4 summarizes the presentations that explored the challenges associated with data sharing and the associated discussion. Chapter 5 primarily summarizes the discussions from Sessions 4 and 5 of the workshop, where participants offered insights into possible ways forward for the sharing of data from
INTRODUCTION 3 environmental health research and overall reflections. The workshop agenda is found in Appendix A, and biographical sketches of the workshop speakers are included in Appendix B.
