Genetic Resources on Genetic Resources on the Webthe Web

Vast amounts of genetic Vast amounts of genetic information can be found on the information can be found on the

Web.Web.

However, finding accurate and However, finding accurate and useful information can be useful information can be

tedioustedious

Assessing the Value of Web SitesAssessing the Value of Web Sites DisclosureDisclosure

Open disclosure of mission and supportOpen disclosure of mission and support Confidentiality Confidentiality

PoliciesPolicies UpdatesUpdates

Latest revisionLatest revision ValidityValidity

Staff and consultantsStaff and consultants Code of EthicsCode of Ethics

Sample Web Searches on GoogleSample Web Searches on Google

TermsTerms HitsHits GeneticsGenetics 120,000,000 120,000,000 Human geneticsHuman genetics 57,700,00057,700,000 Cancer geneticsCancer genetics 37,600,00037,600,000 Breast cancer geneticsBreast cancer genetics 7,140,0007,140,000 HBOC (spelled out)HBOC (spelled out) 462,000462,000 BRCA1/2BRCA1/2 77,90077,900 BRCA1/2 andBRCA1/2 and 14,40014,400

prophylactic mastectomyprophylactic mastectomy

As the revolution in molecular As the revolution in molecular genetics gains momentum in genetics gains momentum in

general clinical practice, general clinical practice, patients are increasingly patients are increasingly

questioning their care providers questioning their care providers regarding the application related regarding the application related to their health and that of their to their health and that of their

families.families.

Imagine this…..Imagine this…..

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

Hmmmmm……….Hmmmmm………. What is this and what causes it?What is this and what causes it? Is the patient at high risk for future cancer? For Is the patient at high risk for future cancer? For

what?what? What risk management should be What risk management should be

recommended?recommended? Who else in the family is at risk?Who else in the family is at risk? Is there genetic testing?Is there genetic testing? Should testing be offered?Should testing be offered? Is testing available through research or clinical Is testing available through research or clinical

lab(s)?lab(s)? What does it cost for a clinical test?What does it cost for a clinical test? Does insurance pay for it?Does insurance pay for it?

If you do not know the If you do not know the syndrome that would explain syndrome that would explain this constellation of cancers, this constellation of cancers,

there is a web site at which you there is a web site at which you can search on one, such as can search on one, such as

sarcoma, to find the syndrome:sarcoma, to find the syndrome: http://ghr.nlm.nih.gov/

Once you know the syndrome Once you know the syndrome then go to GeneTests which is a then go to GeneTests which is a

NIH, HRSA and DOE funded NIH, HRSA and DOE funded genetic testing and clinical genetic testing and clinical

information databaseinformation database

GeneTests includes:GeneTests includes: 588 laboratories (clinical and 588 laboratories (clinical and

research from around the world) research from around the world) Tests for 1,179 diseases (clinical and Tests for 1,179 diseases (clinical and

research) research) 1,062 genetics clinics 1,062 genetics clinics 317 Peer-reviewed clinical summaries 317 Peer-reviewed clinical summaries

with revision history with revision history Links to resources for familiesLinks to resources for families Education materialsEducation materials

http://http://www.genetests.orgwww.genetests.org//