Articles and reports
Association of State and Territorial Health Officials, USA
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Policy Forums
Summary of Policy Forums held in January and June of 2002, discussing policy issues for health officials, legislatures and government officials so to offer a greater understanding of the potential uses for genetics to improve public health and the information needed to make informed policy decisions.
American Society of Law, Medicine and Ethics
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Cancer Genetic Susceptibility Testing: Ethical and Policy Implications for Future Research and Clinical Practice
Benjamin S. Wilfond, Karen H. Rothenberg, Elizabeth J. Thomson, and Caryn Lerman, for the Cancer Genetic Studies Consortium (NIH) Journal of Law, Medicine & Ethics, 25, no. 4 (1997): 243-51.
British Medical Journal
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The world’s most neglected diseases – Ignored by the pharmaceutical industry and by public-private partnerships
Yamey G. British Medical Journal 2002; 325: 176-177
Commission on Macroeconomics and Health, WHO
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Macroeconomics and health: investing in health for economic development
Report of the commission on macroeconomics and health (English/Spanish/French)
Council of State Governments, USA
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Advances in Genetic Information: A Guide for State Policy Makers
Created to help state leaders and policy makers consider how advances in genetic technology are likely to change health care, insurance, employment, justice and state policy; and to provide lay people with an understanding of the human genome project. -
Charting New Territory: Legislative Guide to Genetic Privacy and Discrimination
Discusses the issues associated with genetic research such as the effects of genetics legislation, the Human Genome Project, uses of genetic testing, and the ethical, legal and social implications of human genetics research.
Department of Health, South Africa
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Human Genetics Policy Guidelines for the Management and Prevention of Genetic Disorders, Birth Defects and Disabilities
Designed to facilitate the integration of genetic services into the comprehensive Primary Health Care package,focussing on patient care and primary prevention.
Department of Health, UK
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Tackling Health Inequalities: 2002 Cross-Cutting Review
Assesses the progress and decides upon the future priorities in order to bridge the health gap.
Genomics and Disease Prevention, CDC
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The Integration of Genomics into Public Health Research, Policy, and Practice in the United States
Laura M. Beskow, Muin J. Khoury, Timothy G. Baker, and James F. Thrasher Examines the opportunities for and responsibilities of the public health community in bridging the gap between gene discovery and the application of genetic information to improve health and prevent disease.
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General Recommendations for Quality Assurance Programs for Laboratory Molecular Genetic Tests
Produced by the Public Health Practice Program Office in the Division of Laboratory Systems in Atlanta, Georgia, this is a list of policy recommendations after a critical examination of current technologies used in molecular testing, including, nucleic acid amplification (NAA), DNA sequencing, Southern blot analysis (SBA), and fluorescence in situ hybridization (FISH)
Global Forum for Health Research, Switzerland
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The 10/90 Gap on Health Research (2001-2002)
Focuses on the crucial role of health and health research in the reduction of poverty; progress in the definition of priorities for health research; the development of partnerships and networks in key research areas; and the application of a new tool for developing the priority research agenda.
Health Resources and Services Administration (HRSA)
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Genetics Issues and Your Role as a State Policy Maker
Presents conclusions and recommendations by participants concerning state policies for newborn screening tests.
Journal of Cinical Genetics
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Genetic technologies, health care policy and the patent bargain
Caulfield TA, Knoppers BM, Gold ER, Sheremeta LE, Bridge PJ. Clinical Genetics 2003; 63(1): 15-18
Journal of Gene Therapy
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Mapping Public Policy on Genetics
Weisfeld NE; Gene Therapy. 2002 Jun; 9 (11): 662-6
National Conference of State Legislatures (NCSL)
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Genetics Policy and Law: A Report for Policymakers
Provides policymakers with objective, thorough, and scholarly information to help draft sound genetics-related legislation. -
Genetics Policy Report: Employment Issues
Provides policymakers with a comprehensive framework on public policy for human genetic technologies in the workplace. -
Genetics Policy Report: Insurance Issues
Explores insurance policy for the genomic age and discusses various policy options available to lawmakers to govern the use of genetic information in insurance, with special emphasis on health, life, disability, and long-term care insurance. -
Genetics Policy Report: Privacy
Discusses the personal and predictive nature of genetic information and the implications of this knowledge. Provides a comprehensive framework needed for sound public policy related to genetic privacy. -
Genetics Policy Report: Reproductive Technologies
Provides information and analysis to assist policymakers confronted with public policy issues surrounding reproductive genetics.
Organization for Economic Co-operation and Development (OECD)
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Biotechnology and Sustainability: The Fight Against Infectious Disease (booklet)
Discusses how biotechnology and genomics science has been used to fight infectious disease, the potential for life science research to fight disease, and the barriers to health care product delivery. -
Genetic Testing: Policy Issues for the New Millennium
This report summarizes the topics, issues, and policy considerations discussed at the OECD Workshop on “Genetic Testing: Policy Issues for the New Millennium”.
Partnership for Prevention Organization
Social Science and Medicine
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Integrating genetics as practices of primary care
Rosemary Robina, Sylvia Metcalfe; Social Science & Medicine 59 (2004) 223–233
The Nuffield Trust
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Genetics and Health: Policy Issues for genetic science and their implications for health and health services
Dr Ron Zimmern MA, FRCP, FFPHM and Christopher Cook BA