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American Association for the Advancement of Science (AAAS) - Federal Focus Data Access Symposium

In order to encourage discussion and debate on this important topic, the American Association for the Advancement of Science (AAAS) and Federal Focus, Inc. jointly sponsored a symposium on the Data Access issue on February 26, 1999, in Washington, D.C. Panelists from a variety of key organizations participated in the symposium, including:

Ms. Kathy Casey
Legislative Director
Office of Senator Richard Shelby (R-AL)

Dr. Jean Fruci
Professional Staff Member of the Technology Subcommittee
House Science Committee

Dr. Wendy Baldwin
Deputy Director for Extramural Research
National Institutes of Health

Dr. Mary Ellen Sheridan
Assistant Vice President for Research
University of Chicago

Dr. Roger McClellan
President
Chemical Industry Institute of Toxicology

Mr. Marc Garufi
Budget Examiner, Health Division
Office of Management and Budget

Approximately 175 members of the interested public were also in attendance, representing federal government, academia, various associations, industry, the media, and others from the scientific community. The symposium provided an excellent forum to lay out the many issues to be addressed in implementing the Data Access provisions of the new law. A complete transcript of the AAAS-Federal Focus symposium can be found on the AAAS website.

http://www.aaas.org
CRE Analysis of the AAAS-Federal Focus Data Access Symposium: Identified Implementation Issues and Proposed Solutions

The AAAS-Federal Focus Data Access symposium was truly a seminal event in the overall Data Access debate due to the capacity crowd (approximately 175 participants) and the broad range of participants from academia, federal agencies, industry, science organizations, professional associations, and the public. The issue was thoroughly aired in terms of identifying problems to be addressed with implementation of the Data Access provisions called for under the statute. Examples include confidentiality concerns, commingling of data, assessment of user fees, and coverage of the term "data."

This section encompasses CRE's efforts to craft proposed solutions to the potential problems identified at the AAAS-Federal Focus forum. As in other section of the Website, CRE encourages comments on these proposed solutions so that they might be honed to make them maximally beneficial to OMB and the agencies. Also, this list may be expanded in the event additional problems are brought to our attention.

Patient Privacy/Confidentiality

Text to come.

Analysis of other potential implementation issues and proposed solutions are currently underway. Please return to this section to review additional materials in the near future.