Excerpt

On November 1, 1997, the National Research Council’s Board on Biology brought together a group of scientists and other experts to discuss the policy issues raised by the ongoing revolution in genetic science. The primary reason for the workshop, called “Privacy Issues in Biomedical and Clinical Research,” was the worry that federal legislation intended to ensure the privacy of genetic information in medical records could have unanticipated—and damaging—consequences for research. But the discussions at the workshop also identified a number of other problems and potential problems concerning genetic research. For example, in universities and research hospitals an important safeguard against the misuse of genetic information generated by research is the institutional review board (IRB), which must review and approve all research affecting humans; workshop participants identified weaknesses that hamper IRB review of genetic research protocols.

Contents

• Steering Committee
• Board on Biology
• Commission on Life Sciences
• Preface
• The National Academy of Sciences
• Introduction: Privacy Issues in Research
• The Potential—and the Threat—of Genetic Information
• Can We—and Should We—Ensure Genetic Privacy?
• Handling Genetic Data in the Laboratory
• Institutional Safeguards
• What, if Anything, Should the Federal Government Do?
• Appendixes
  • A Program and Discussion Questions
  • B Agenda
  • C A Comment by Frederick R. Anderson
  • D Participant Biographies

This report has been prepared with funds provided by the Department of Energy, Grant No. DE-FG02-94ER61939 and the National Cancer Institute, Contract No. N01-OD-4-2139 (Task Order 33).

NOTICE: The project that is the subject of this report was approved by the Governing Board of the National Research Council, whose members are drawn from the councils of the National Academy of Sciences, the National Academy of Engineering, and the Institute of Medicine. The members of the committee responsible for the report were chosen for their special competencies and with regard for appropriate balance.