Genetic Research

Alphabet Soup (U.S. Federal Agencies): CDER: Center For Drug Evaluation and Research; CBER: Center For Biologics Evaluation and Research; CDRH: Center For Devices and Radiological Health; FDA: Food and Drug Administration (part of DHHS); DHHS: Department of Health and Human Services; OHRP: Office For Human Research Protections (part of DHHS); ORI: Office of Research Integrity (part of DHHS); OIG: Office of the Inspector General

Follow this link to find information about Paul and Jesse Gelsinger

U.S. Government Information Sources (DHHS/NIH)

• GeMCRIS / Genetic Modification Clinical Research Information System (NIH database listing active and closed gene therapy trials by disorder, principle investigator, and institution.)
• National Institutes of Health / Public Recombinant DNA Advisory Committee (RAC) Meetings and Conferences
• RAC Clinical Trials in Human Gene Transfer (Includes: Protocols, principle investigators; Quarterly Data Management Reports, updates and narrative adverse event reports.)
• RAC Documents (Includes: letters, reports, guidelines on gene transfer therapy clinical trials; RAC roster; general information and news.)
• Informed Consent Resources for Gene Transfer Studies

National Human Genome Research Institute

Secretary's Advisory Committee on Genetics, Health, and Society. Available from http://www4.od.nih.gov/oba/SACGHS.HTM

Genetic Legislation

• Genetics Legislation, Federal and State
• Genetics Laws and Legislative Activity, National Conference of State Legislatures

Genetics Information

• Gene Therapy Clinical Trials Worldwide (Database maintained by the Journal of Gene Medicine. Wiley Publishers. Coverage: 1989 to present; searchable by disorder, vector, clinical trial status, institution, and PI. Con: entries very brief. Pro: includes both domestic and international trials.)
• GeneTests (Separate science from hype; funded by the National Institutes of Health.)
• The Genetics and Public Policy Center
• Human Genome Project
• Glossary of Genetic Terms / Human Genome Project
• A Hypermedia Glossary of Genetic Terms (Birgid Schlindwein, Weihenstephan Library.)
• Talking Glossary of Genetic Terms / National Human Genome Research Institute
• GeneWatch UK
  • Wallace H. Your Diet Tailored to your Genes: Preventing Diseases or Misleading Marketing. GeneWatch UK. January, 2006. Available from http://www.genewatch.org/uploads/f03c6d66a9b354535738483c1c3d49e4/Nutrigenomics.pdf
• Special Report: Ethics of Genetics (Collection of news articles on unregulated genetic testing and research from the UK Guardian.)

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Last Updated: 2007-09-21

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