Genetic Resources 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 Open disclosure of mission and support  Confidentiality Policies Policies  Updates Latest revision Latest revision  Validity Staff and consultants Staff and consultants  Code of Ethics

Sample Web Searches on Google TermsHits  Genetics120,000,000  Human genetics57,700,000  Cancer genetics37,600,000  Breast cancer genetics7,140,000  HBOC (spelled out)462,000  BRCA1/277,900  BRCA1/2 and 14,400 prophylactic mastectomy

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.

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.

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?

If you do not know the syndrome that would explain this constellation of cancers, there is a web site at which you can search on one, such as sarcoma, to find the syndrome: If you do not know the syndrome that would explain this constellation of cancers, there is a web site at which you can search on one, such as sarcoma, to find the syndrome:

Once you know the syndrome then go to GeneTests which is a NIH, HRSA and DOE funded genetic testing and clinical information database

GeneTests includes:  588 laboratories (clinical and research from around the world)  Tests for 1,179 diseases (clinical and research)  1,062 genetics clinics  317 Peer-reviewed clinical summaries with revision history  Links to resources for families  Education materials