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Genomics and Population Health: United States 2003

Chapter 15: Internet Resources for Genomics and Disease Prevention

computers on grid

 

Jennifer Singh and Kate Reed

 

The Internet offers many resources that may be useful to national, state and local public health professionals interested in learning more about genomics and public health. This chapter provides a selected list of sites that offer starting points. Many other online resources are available; this list is only a snapshot of some that may be useful for integrating genomics into health promotion and disease prevention programs. Please refer to the disclaimer at the end of this chapter.

CDC's Office of Public Health Genomics (OPHG)  

  • CDC Office of Public Health Genomics (OPHG)
    This site provides information about ways that human genomic discoveries can be used to improve health and prevent disease. It provides links to activities in public health genomics across the lifespan, including links to programs throughout CDC.
  • Weekly Update
    A weekly update on the impact of human genetic research on disease prevention and public health. To receive notification of this update by e-mail, please send the following message:
    To: listserv@listserv.cdc.gov
    Subject: (leave blank)
    Message: subscribe genetics
  • Public Health Perspectives Series
    On the Highlights page of the OPHG Web site, each Public Health Perspective focuses on a single topic and provides information relevant to public health practice. Past topics include family history, BRCA1/2 testing, obesity, and others.

Human Genome Project

  • Human Genome Project Information from the US Department of Energy
    The U.S. Department of Energy and the National Institutes of Health formally initiated the Human Genome Project in 1990. The project originally was planned to last 15 years, but rapid technological advances allowed it to be completed in 2003. This site provides an overview of the Human Genome Project and links to other sites.
  • National Human Genome Research Institute (NHGRI)
    The NHGRI supports genetic and genomic research, investigation into the ethical, legal and social implications surrounding genetics research, and educational outreach activities in genetics and genomics.
  • Selected articles:
    • Celebrating the 50th Anniversary of the Double Helix
      Articles from Annals of Internal Medicine 1 April 2003 Volume 138 Issue 7
    • Primer on Medical Genomics: History of Genetics and Sequencing of the Human Genome
    • A Vision for the Future of Genomics Research
    • New England Journal Of Medicine: Genomic Medicine Series (2002-2003)  The full text of all thirteen articles in this series is available free to all users.

Genomic Research

  • August 2003 Issue Brief “Applied Public Health Research in Genomics”
    An issue brief released by ASTHO that outlines the importance of applied public health research in genomics and the types of research needed, the ethical, legal, and social issues that accompany this type of research, current public health genomics research activities, and future research directions.

Genetic Testing

  • GeneTests/GeneClinics
    A publicly-funded medical genetics information resource developed for physicians, other healthcare providers, researchers, and others needing information about existing genetic tests. This site includes expert-authored reviews, directories of laboratories and clinics offering genetic tests, and educational materials.
  • National Academy of Sciences, Human Gene Testing
    A summary of human genetic testing that ranges from the unraveling of the nature of the gene to the social dilemmas posed by genetic testing.
  • Understanding Gene Testing
    Provided by the National Cancer Institute, illustrates what genes are, explains how mutations occur and how they are identified within genes, and discusses the benefits and limitations of gene testing for cancer and other disorders.

Family History

  • Genetics & Your Practice
    A resource that provides practical information and resources to assist the busy professional in integrating genetics into their patient care.
  • The Genetic Family History in Practice newsletter for health care professionals from NCHPEG's Family History Working Group
  • Your Family History
    A family history tool developed through the collaboration with the American Society of Human Genetics, the National Society of Genetic Counselors and Genetic Alliance.

Genes and Diseases

  • Office of Rare Diseases (ORD)
    This Web site provides information about ORD-sponsored scientific activities, an ORD cosponsored genetic and rare diseases information center, and a portal to databases that provide information on major topics of interest in rare diseases research.
  • Genes and Diseases
    A collection of articles that discuss genes and the diseases that they cause from the National Center for Biotechnology Information (NCBI).

Genes and Diseases: Cancer

  • National Cancer Institute 
    • Cancer Genetics
      A comprehensive list of cancer genetics information ranging from general to specific cancer information, policy, and cancer genetics research and information.

Genes and Diseases: Birth Defects

  • National Birth Defects Prevention Network
    A group with the mission to establish and maintain a national network of state and population-based programs for birth defects surveillance and research to assess the impact of birth defects upon children, families, and health care; to identify factors that can be used to develop primary prevention strategies; and to assist families and their providers in secondary disabilities prevention.

Genes and Diseases: Newborn Screening

Public Health Ethical, Legal and Social Issues (PHELSI)

  • Michigan Centers for Genomics and Public Health
    The Michigan Center for Genomics & Public Health seeks to integrate genomic discoveries into public health practice, with consideration of the ethical, legal, and social issues associated with the application of these discoveries, as well as the involvement of the community at large.
  • Genetics and Ethics Page
    A clearinghouse for information on the social, ethical and policy issues associated with genetic and genomic knowledge and technology.

Policy

  • National Conference of State Legislatures (NCSL)
    A group commissioned to provide state legislators and other policymakers with objective, comprehensive, and scholarly information from a non-partisan source to facilitate the drafting of sound genetics-related legislation.
  • Genetics and Public Policy Center
    Information on genetic technologies and genetic policies for the public, media and policymakers. The Genetics and Public Policy Center is funded through a grant from The Pew Charitable Trusts.

Public Health Resources

  • Coalition of State Genetic Coordinators
    An organization of state and territorial genetics coordinators and others who support the mission to promote core public health functions as they apply to genetics.
  • Genomics and Chronic Disease Summit Report, 2002
    A report from the Association of State and Territorial Chronic Disease Directors.
  • The WHO Genetics Programme
    Information about activities undertaken by the WHO Human Genetics Program to help control the “most common hereditary diseases and those having a genetic predisposition.”

Educational Resources

  • Genetic Educational Materials Database (GEMS)
    Searchable listing of public health genetics policy documents and clinical genetics educational materials from the National Newborn Screening and Genetics Resource Center (NNSGRC).
  • OPHG List of Training Tools 
    A list of available training tools, courses, and multi-media educational materials designed to assist public health professionals and educators integrate genomics into public health practice.

 

 

Contact Us:
  • Centers for Disease Control and Prevention
    1600 Clifton Rd. Atlanta, GA 30333 USA
    800-CDC-INFO (800-232-4636)
  • Additional information for Public Health Genomics is available on our contact page.
USA.gov: The U.S. Government's Official Web PortalDepartment of Health and Human Services
Centers for Disease Control and Prevention   1600 Clifton Rd. Atlanta, GA 30333, USA
800-CDC-INFO (800-232-4636) TTY: (888) 232-6348 - Contact CDC–INFO
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