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Genetic Resource on the Web

Genetic Resource on the Web. Vast amounts of genetic information can be found on the Web. However, finding accurate and useful information can be tedious. Assessing the Value of Web Sites. Disclosure Open disclosure of mission and support Confidentiality Policies Updates Latest revision

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Genetic Resource on the Web

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  1. Genetic Resource on the Web

  2. Vast amounts of genetic information can be found on the Web.However, finding accurate and useful information can be tedious

  3. Assessing the Value of Web Sites • Disclosure • Open disclosure of mission and support • Confidentiality • Policies • Updates • Latest revision • Validity • Staff and consultants • Code of Ethics

  4. Sample Web Searches on Google Terms Hits • Genetics 120,000,000 • Human genetics 57,700,000 • Cancer genetics 37,600,000 • Breast cancer genetics 7,140,000 • HBOC (spelled out) 462,000 • BRCA1/2 77,900 • BRCA1/2 and 14,400 prophylactic mastectomy

  5. As the revolution in molecular genetics gains momentum in general clinical practice, patients are increasingly questioning their care providers regarding the application related to their health and that of their families.

  6. Imagine this….. • A 20 year old patient relates a personal history of sarcoma when he was 10. His sister had leukemia at 20 and his father died of a brain tumor at 35. In addition his paternal aunt had breast cancer at 30, and he knows his grandmother died of some type of cancer but is unsure what it was .

  7. Hmmmmm………. • What is this and what causes it? • Is the patient at high risk for future cancer? For what? • What risk management should be recommended? • Who else in the family is at risk? • Is there genetic testing? • Should testing be offered? • Is testing available through research or clinical lab(s)? • What does it cost for a clinical test? • Does insurance pay for it?

  8. GeneTests is a NIH, HRSA and DOE funded genetic testing and clinical information database

  9. GeneTests includes: • 588 laboratories (clinical and research from around the world) http://www.genetests.org/servlet/access?id=8888891&key=D-344nNf2JynK&fcn=y&fw=QpGh&filename=/labsearch/searchdztest.html • Tests for 1,179 diseases (clinical and research) • 1,062 genetics clinics http://www.genetests.org/servlet/access?id=8888891&key=D-344nNf2JynK&fcn=y&fw=L2zb&filename=/clinicsearch/searchclinic.html • 317 Peer-reviewed clinical summaries with revision history http://www.genetests.org/servlet/access?id=8888891&key=D-344nNf2JynK&fcn=y&fw=GaNo&filename=/reviewsearch/searchdz.html • Links to resources for families • Education materials http://www.genetests.org/servlet/access?id=8888891&key=D-344nNf2JynK&fcn=y&fw=Reog&filename=/concepts/conceptsindex.html

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