Privacy issues in biomedical and clinical research : privacy issues in biomedical and clinical research proceedings of forum on November 1, 1997, National Academy of Sciences, Washington, D.C. / Board on Biology, National Research Council.

Format:

Book

Contributor:

National Research Council (U.S.). Board on Biology.

Series:

Compass series (Washington, D.C.)

The compass series

Language:

English

Subjects (All):

Medicine--Research--Moral and ethical aspects.

Medicine.

Physical Description:

1 online resource (58 p.)

Edition:

1st ed.

Place of Publication:

Washington, D.C. : National Academy Press, 1998.

Language Note:

English

Summary:

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.

Contents:

""Front Matter""; ""Preface""; ""Contents""; ""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?""; ""APPENDIX A Program and Discussion Questions""; ""APPENDIX B Agenda""; ""APPENDIX C A Comment by Frederick R. Anderson""; ""APPENDIX D Participant Biographies""

Notes:

Description based upon print version of record.

ISBN:

9786612082023

9780309173513

0309173515

9781282082021

1282082027

9780309520966

0309520967

9780585142722

0585142726

OCLC:

923257793