JAMA 's March 19 issues has published an update of a 10-year old article on genetic resources on the web. Key Genetic Resources for the Clinician charts the results of the exponential growth of the internet and increasing availability of genetic resources. This is the "germ" of the article:
Key Internet Genetics Resources With Web Site Addresses
Directories of Genetics Clinics and Clinical Genetics Specialists
GeneTests (select "Clinic Directory"): http://www.genetests.org
American College of Medical Genetics (select "Find a Geneticist"): http://www.acmg.net
National Society of Genetic Counselors: http://www.nsgc.org/resourcelink.cfm
American Society of Human Geneticsa: http://www.ashg.org/pages/member_search.shtml
Cancer Genetics Services Directory: http://www.cancer.gov/search/genetics_services/
Genetic and Rare Diseases Information Center: http://rarediseases.info.nih.gov/
Disease-Specific Information for Health Care Professionals
GeneTests (select "GeneReviews"): http://www.genetests.org
OMIM (Online Mendelian Inheritance in Man): http://www.ncbi.nlm.nih.gov/sites/entrez?db=OMIM
Genes and Disease (NCBI) (organized by parts of the body affected): http://www.ncbi.nlm.nih.gov/books/bv.fcgi?rid=gnd
Chromosomal Variation in Man: http://www.wiley.com/legacy/products/subject/life/borgaonkar/access.html
Patient Information and Support Groups
Genetics Home Reference: http://www.ghr.nlm.nih.gov/
Genetic Alliance: http://www.geneticalliance.org
National Organization for Rare Disorders: http://www.raredisorders.org
GeneTests (search for condition, "Resources"link): http://www.genetests.org
Genetic and Rare Diseases Information Center: http://rarediseases.info.nih.gov/
Office of Rare Diseases, National Institutes of Health: http://rarediseases.info.nih.gov/
Chromosome Deletion Outreach: http://www.chromodisorder.org/CDO/
National Human Genome Research Institute (Specific Genetic Disorders page): http://www.genome.gov/10001204
Pregnancy, Birth Defects, Effects of Medications
March of Dimes: http://www.marchofdimes.com/pnhec/4439.asp
Organization of Teratology Information Specialists (select "Fact Sheets" for medication information): http://www.otispregnancy.org/
Family History Tools
US Surgeon General's Family History Initiative: http://www.hhs.gov/familyhistory/
Centers for Disease Control and Prevention (family history fact sheets, tools, resources): http://www.cdc.gov/genomics/public/famhist.htm
American Medical Association (brochure and questionnaires for prenatal, pediatric, and adult patients): http://www.ama-assn.org/ama/pub/category/2380.html
National Society of Genetic Counselors: http://www.nsgc.org/consumer/familytree/index.cfm
Genetic Alliance (family history tools and resources for consumers): http://www.geneticalliance.org/ws_display.asp?filter=fhh
Genetic Tests
GeneTests (select "Laboratory Directory";for DNA banking, select "Services"): http://www.genetests.org
Biochemical Genetics Tests (biochemical genetic tests): http://biochemgen.ucsd.edu/
National Newborn Screening & Genetics Resource Center (newborn screening tests, state newborn screening,and genetics programs): http://genes-r-us.uthscsa.edu
National Society of Genetics Counselors—DNA banking information, patient brochure: http://www.nsgc.org/dnabanking.cfm
Guidelines for Genetic Testing
American College of Medical Genetics (select "Practice Guidelines" and "Policy Statements"): http://www.acmg.net
American Society of Human Genetics (select "Policy/Advocacy"): http://www.ashg.org
National Society of Genetic Counselors (select "Practice Guidelines" and "Position Statements"): http://www.nsgc.org
National Guideline Clearinghouse (search for "genetic(s) and name of condition"): http://www.guideline.gov
Genetic Information—Implications for Insurance and Employment
National Human Genome Research Institute Policy and Legislative Database: http://www.genome.gov/PolicyEthics/LegDatabase/pubsearch.cfm; Policy & Ethics page: http://www.genome.gov/PolicyEthics/
National Conference of State Legislatures—Genetics Laws and Legislative Activity: http://www.ncsl.org/programs/health/Genetics/charts.htm
Genetic Alliance: http://www.geneticalliance.org/ws_display.asp?filter=policy.discrimination
National Society of Genetic Counselors: http://www.nsgc.org/consumer/genetic_discrimination_resource.cfm
General Genetics Resources
National Human Genome Research Institute: http://genome.gov/Education/
American Society of Human Genetics (select "Education"): http://www.ashg.org
Dolan DNA Learning Center: http://www.dnalc.org/
Genetic Science Learning Center: http://learn.genetics.utah.edu/
Genetics Education Center: http://www.kumc.edu/gec
Gateways to Clinical Genetics Resources
Genetic Disorder Information on the Web: http://www.ornl.gov/sci/techresources/Human_Genome/posters/chromosome/diseaseindex.shtml
Information for Genetic Professionals: http://www.kumc.edu/gec/geneinfo.html
Office of Rare Diseases, National Institutes of Health: http://rarediseases.info.nih.gov/
National Human Genome Research Institute Online Health and Support Resources: http://www.genome.gov/11510197
Resources to Help Clinicians Integrate Genetics Into Patient Care
National Coalition for Health Professional Education in Genetics: http://www.nchpeg.org
GeneTests (select "Educational Materials"and "Genetic Tools"): http://www.genetests.org
March of Dimes—Genetics and Your Practice: http://marchofdimes.com/gyponline/index.bm2
Clinical Genetics Specialists Professional Organizations
American College of Medical Genetics: http://www.acmg.net
National Society of Genetic Counselors: http://www.nsgc.org
International Society of Nurses in Genetics: http://www.isong.org
American Board of Medical Genetics: http://www.abmg.org
American Board of Genetic Counseling: http://www.abgc.net
a Can be searched by name, city, or state but does not currently differentiate genetics researchers from clinicians,unless one cross-checks individual entries with certification status.