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Privacy Issues in Biomedical and Clinical Research (1998)

Chapter: Appendix A: Program and Discussion Questions

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Suggested Citation:"Appendix A: Program and Discussion Questions." National Research Council. 1998. Privacy Issues in Biomedical and Clinical Research. Washington, DC: The National Academies Press. doi: 10.17226/6326.
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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:

  1. What are the key concerns that the legislation hopes to address?
  2. How does the legislation address these concerns?
Suggested Citation:"Appendix A: Program and Discussion Questions." National Research Council. 1998. Privacy Issues in Biomedical and Clinical Research. Washington, DC: The National Academies Press. doi: 10.17226/6326.
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  1. 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.

Suggested Citation:"Appendix A: Program and Discussion Questions." National Research Council. 1998. Privacy Issues in Biomedical and Clinical Research. Washington, DC: The National Academies Press. doi: 10.17226/6326.
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Page 31
Suggested Citation:"Appendix A: Program and Discussion Questions." National Research Council. 1998. Privacy Issues in Biomedical and Clinical Research. Washington, DC: The National Academies Press. doi: 10.17226/6326.
×
Page 32
Next: Appendix B: Agenda »
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After discussions with the National Cancer Institute and the Department of Energy the Board on Biology of the National Research Council agreed to run a workshop under the auspices of its Forum on Biotechnology entitled "Privacy Issues in Biomedical and Clinical Research" on November 1, 1997. The organizers want to stress the forum was not intended to cover the full gauntlet of issues concerning Genomics and the Privacy of Medical Records. The emphasis of this forum was to look at pending legislation in Congress (Fall, 1997) and consider, if enacted as written, how this would affect genetic research. The broad language of this legislation written to protect the individual could inadvertently restrict research intended to help these same individuals. Scientific progress requires the sharing of information for the validation of results and the dissemination of gained knowledge to be effective. Other issues which were touched upon in this forum but not fully explored include; the trust of individuals involved in genetic studies in the manner their genetic information could be used, the practice of the generalized "linking" of particular ethnic groups with specific genetic traits, and the potential for positive and negative impact on the quality of life by having knowledge of one's genetic potential. These and other issues which have come upon us in the age of genomics require separate, focused efforts to explore their potential effect on society.

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