Appendix A Program and Discussion Questions

Congress has begun to draft legislation to help ensure the privacy of general medical records. At the same time the issue of whether information obtained by the emerging medical technology of genetic testing should merit protection through specific legislation is being discussed. Although no federal legislation has been passed, pending privacy legislation includes such things as specific language that should be used in obtaining informed consent, which signatures should be obtained when releasing results of medical tests to third parties, etc. In the desire to protect people from unwanted intrusion of their medical records, the broad language of these potential laws may affect biomedical and clinical research, and the use of genetic testing in this research.

After discussions with the National Cancer Institute and the Department of Energy the Board on Biology of the National Research Council has agreed to run a workshop under the auspices of its Forum on Biotechnology entitled "Privacy Issues in Biomedical and Clinical Research." Experts from a variety of sectors affected by human genetic research will assemble for an open exchange of views in a neutral setting. Congressional staff and advocates for legislation addressing genetic privacy and discrimination will discuss current legislative initiatives. Researchers and health care providers from government, academe, and industry will share their perspectives on these issues and discuss concerns arising from the legislation. This forum will be held on Saturday, November 1 from 8:00 am until 1:45 pm.

Forum questions:

  1. What are the key concerns that the legislation hopes to address?
  2. How does the legislation address these concerns?


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--> Appendix A Program and Discussion Questions Congress has begun to draft legislation to help ensure the privacy of general medical records. At the same time the issue of whether information obtained by the emerging medical technology of genetic testing should merit protection through specific legislation is being discussed. Although no federal legislation has been passed, pending privacy legislation includes such things as specific language that should be used in obtaining informed consent, which signatures should be obtained when releasing results of medical tests to third parties, etc. In the desire to protect people from unwanted intrusion of their medical records, the broad language of these potential laws may affect biomedical and clinical research, and the use of genetic testing in this research. After discussions with the National Cancer Institute and the Department of Energy the Board on Biology of the National Research Council has agreed to run a workshop under the auspices of its Forum on Biotechnology entitled "Privacy Issues in Biomedical and Clinical Research." Experts from a variety of sectors affected by human genetic research will assemble for an open exchange of views in a neutral setting. Congressional staff and advocates for legislation addressing genetic privacy and discrimination will discuss current legislative initiatives. Researchers and health care providers from government, academe, and industry will share their perspectives on these issues and discuss concerns arising from the legislation. This forum will be held on Saturday, November 1 from 8:00 am until 1:45 pm. Forum questions: What are the key concerns that the legislation hopes to address? How does the legislation address these concerns?

OCR for page 31
--> To what degree does this legislation create new concerns for the biomedical research community? Format: The format will be a roundtable discussion with several speakers introducing issues for group discussion to promote an open exchange of views among NAS members, federal agency administrators, industrial scientists, and university researchers.