Resources: Links

 

Quick links to categories below:

 

• Systematic, Evidence-Based Review of Genetic Tests
• Genetic Testing Regulation and Policy
• Guidelines for Genetic Testing
• Genetic Counseling Services
• Patient Advocacy
• Professional Organizations Related to Genetic Testing
• Educational Resources
  • Genetic Testing
  • Evidence-Based Medicine

 

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Systematic, Evidence-Based Review of Genetic Tests

• Centers for Disease Control and Prevention (CDC)
  Evaluation of Genomic Applications in Practice and Prevention (EGAPP). An initiative to develop and implement a systematic, evidence-based process for assessing genetic tests. Builds on CDC-funded ACCE model process.

  • EGAPP initiative overview
    
  • EGAPP Working Group independent web site
    • CDC-Commissioned Evidence Reports
    • Working Group Recommendation Statements
      
  • ACCE, a model process for evaluating data on emerging genetic tests.

• Agency for Healthcare Research and Quality Evidence-Based Practice

• U.S. Preventive Services Task Force
  An independent panel of experts in primary care and prevention that systematically reviews the evidence of effectiveness and develops recommendations for clinical preventive services.

• Cochrane Collaboration

• Blue Cross/Blue Shield Association, Technology Evaluation Center
• Institute for Clinical and Economic Review

 

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Genetic Testing Regulation and Policy

 

• Regulation (For more information, see FAQ, “Who regulates genetic tests?” )
  • U.S. Food and Drug Administration (FDA)
    FDA regulates test kits sold to laboratories by commercial manufacturers as diagnostic devices. FDA also regulates “analyte specific reagents,” component reagents that are used by laboratories as part of genetic laboratory developed tests.
    
    
  • Clinical Laboratory Improvement Amendments (CLIA)
    CLIA establishes quality standards for all laboratories providing testing to ensure the accuracy, reliability and timeliness of patient test results regardless of where the test was performed.

• Policy
  • Secretary’s Advisory Committee on Genetics, Health, and Society (U.S. Department of Health & Human Services)
    DHHS Secretary’s web site contains reports, meeting web casts and minutes.
    
    
  • Genetics & Public Policy Center 
    News, issue briefs, and educational material related to genetic testing. Center is supported at Johns Hopkins University with funding from the Pew Charitable Trusts and the NIH National Human Genome Research Institute.

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Genetic Testing Guidelines

• National Guideline Clearinghouse
  A public resource for evidence-based clinical practice guidelines from the Agency for Healthcare Research and Quality.

• American College of Medical Genetics
  Standards and Guidelines

• American Society of Human Genetics
  Policy Statements

• National Society of Genetic Counselors
  • Practice Guidelines
  • Position Statements

 

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Genetic Counseling Services

• National Society of Genetic Counselors
  Professional organization web site includes consumer-oriented FAQs about genetic counseling, a “Find a Counselor” search function, and a fact sheet entitled “Five Questions to Ask Before Considering Genetic Testing”.

• National Coordinating Center for the Genetics and Newborn Screening Regional Collaborative Groups
  The goal of this program supported by the Health Resources and Services Administration (Department of Health and Human Services) is to address maldistribution of genetic services and resources by bringing services closer to local communities.

 

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Patient Advocacy

• Genetic Alliance
  A coalition of hundreds of genetic advocacy organizations; web site offers information about genetic conditions and numerous educational and other resources.

• National Working Group on Evidence-Based Healthcare
  Advocacy group whose mission is to ensure “appropriate evidence-based healthcare policy through education and advocacy.”

• National Health Council
  The National Health Council promotes the health of all people, especially those with chronic disease and supports and advocates on behalf of the voluntary health movement.

 

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Professional Organizations Related to Genetic Testing

 

• American Association of Clinical Chemistry
  The American Association of Clinical Chemistry lists guidelines and online test information for consumers.

• American Clinical Laboratory Association
  The clinical laboratory industry's leading advocate providing effective communication with Congress, regulatory bodies, other health care organizations and the public.

• American College of Medical Genetics
  Provides education, resources and a voice for the medical genetics profession. To make genetic services available to and improve the health of the public, the ACMG promotes the development and implementation of methods to diagnose, treat and prevent genetic diseases.

• American Society of Clinical Oncology
  Professional organization committed to advancing the education of oncologists, to advocating for policies that provide access to high-quality cancer care, and to supporting the clinical trials system and the need for increased clinical and translational research.

• Association for Molecular Pathology
  A not-for-profit scientific society dedicated to the advancement, practice, and science of clinical molecular laboratory medicine and translational research based on the applications of genomics and proteomics.

• College of American Pathologists
  The leading organization of board-certified pathologists, serves patients, pathologists, and the public by fostering and advocating excellence in the practice of pathology and laboratory medicine.

• Genetic Alliance
  A coalition of hundreds of genetic advocacy organizations; web site offers information about genetic conditions and numerous educational and other resources.

• International Society of Pharmacogenomics
  An independent, cross-disciplinary group of scientists/investigators who cover the fields of pharmacogenomics with special efforts on science as well as outreach (policy and education).

• International Society of Nurses in Genetics
  A global nursing specialty organization dedicated to fostering the scientific and professional growth of nurses in human genetics and genomics worldwide.

• National Comprehensive Cancer Network
  An alliance of 21 of the world’s leading cancer centers, who working together to develop treatment guidelines for most cancers, and dedicated to research that improves the quality, effectiveness, and efficiency of cancer care.

• National Society of Genetic Counselors
  Professional organization for the genetic counseling profession.

• Pharmacogenetics Working Group
  Pharmaceutical companies involved in pharmacogenetics/genomics research and setting standards for the industry; providing education for the regulators.
  

 

 

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Educational Resources

• Genetic Testing
  • For Consumers
    • Center for Genomics and Public Health, University of Washington
      General information on genetic testing and evidence-based review of tests; links pages with many resources. Center funded by CDC’s Office of Public Health Genomics.
      
      
    • Genetics Science Learning Center, University of Utah
      General information on genetics, genetic testing with links to many resources.
      
      
    • National Cancer Institute (U.S. National Institutes of Health)
      “Understanding Gene Tests,” a slide set that explains genetic testing and some associated ethical, legal, and social implications (2006).
      
      
    • Lab Tests Online: The Universe of Genetic Testing
      A “peer reviewed, noncommercial, patient centered” web site that explains genetic testing to consumers.
      
      
• For healthcare professionals
  • GeneTests
    Medical genetics information resource developed for physicians, other healthcare providers, and researchers; includes educational materials and slide sets.
    
    
  • National Coalition for Health Professional Education in Genetics
    Resources include educational materials and resources including a database of reviewed information on genetics for health professionals and consumers.
    
    
  • Michigan Center for Genomics & Public Health, University of Michigan
    “Genomics for Public Health Practitioners;” an animated guide (2004). Center funded by CDC’s Natonal Office of Public Health Genomics.
    
    
  • American College of Medical Genetics
    Standards and Guidelines
    
    
• Evidence-Based Medicine
  • Journal of the American Medical Association, Patient Page
    “Evidence-Based Medicine” (2006)
    
    
  • U.S. National Institutes of Health
    Resources and databases on evidence-based medicine.
    
    
  • Centre for Evidence-Based Medicine, Oxford, UK
    Evidence-based medicine information and tools.
    
    
  • Society for Medical Decision Making
    Multidisciplinary group dedicated to systematic approaches to clinical decision making and policy-formation in health care.

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