Web Resources
Cancer Genetics
National Cancer Institute: Elements
of Cancer Genetics Risk Assessment and Counseling
http://www.cancer.gov/cancertopics/pdq/genetics/risk-assessment-and-counseling/HealthProfessional/page4
U.S. Cancer
Genetics Services Directory
http://www.cancer.gov/search/genetics_services/
Continuing Medical Education: Genetics
National Coalition for Health Professional Education in Genetics
http://www.nchpeg.org
National Center for Biotechnology
Information: Genes and disease: a collection of articles that discuss genes and
the diseases that they cause
http://www.ncbi.nlm.nih.gov/books/bv.fcgi?rid=gnd
National Institutes of Health: National Library of Medicine
http://www.nlm.nih.gov/pubs/cbm/health_risk_communication.html
Dictionary of Genetic Terms
Human Genome Project
http://www.ornl.gov/sci/techresources/Human_Genome/publicat/primer2001/glossary.shtml
Ethics Resources
Genethics
http://genethics.ca/
Genethics: Murdoch Childrens Research Institute
http://www.genecrc.org/site/ge/index_ge.htm
U.S. Department of Energy: Legal, Ethical, and Social Issues
http://www.ornl.gov/sci/techresources/Human_Genome/elsi/elsi.shtml
Family History Resources-
Professional
American Medical Association
http://www.ama-assn.org/ama/pub/category/2380.html
Centers for Disease Control
http://www.cdc.gov/genomics/public/famhistMain.htm
Centres for Disease Control: Public
Health Perspective: Family History Tools
http://www.cdc.gov/genomics/info/perspectives/famhistr.htm
National Coalition for Health
Professional Education in Genetics (2004) The Genetic Family History in
Practice. (PDF only)
http://www.nchpeg.org/newsletter/inpracticesum04.pdf Accessed…
National Cancer Institute: Elements
of Cancer Risk Assessment and Counseling: Taking a Family History:
http://www.cancer.gov/templates/doc.aspx?viewid=c0fc1ac3-607b-44a5-9d24-39b0a2a4703c&version=HealthProfessional§ionID=1&#Section_18
Family History Resources- Public
American Medical Association
http://www.ama-assn.org/ama/pub/category/2380.html
Centers for Disease Control
http://www.cdc.gov/genomics/public/famhistMain.htm
March of Dimes
http://www.marchofdimes.com/pnhec/4439_1109.asp
U.S. Department of Health and Human Services: Family History Intiative
http://www.genome.gov/12513847:
For a practical family history tool, please see:
www.hhs.gov/familyhistory
Genetic Counseling Resources
American Board of Genetic
Counseling
http://genetics.faseb.org/genetics/abgc_diplomates.html
National Society of Genetic
Counselors
http://www.nsgc.org/resourcelink.asp
How To Find A Genetic Counselor
(U.S.)
http://www.genetichealth.com/Resources_How_to_Find_a_Genetic_Counselor.shtml
Canadian
Association of Genetic Counsellors
http://www.cagc-accg.ca/
Genetic Research and Resources
Centers for Disease Control: Human Genome Epidemiology Network
http://www.cdc.gov/genomics/hugenet/default.htm
The National Center for Genome Resources (NCGR)
http://www.ncgr.org/
National Human Genome Research Institute
http://www.genome.gov/
OMIM, Online Mendelian Inheritance
in Man. A catalog of human genes and genetic disorders
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=OMIM
Genetic Testing Resources
GeneTests: a publicly funded
medical genetics information resource developed for physicians, other
healthcare providers, and researchers, available at no cost to all interested
persons.
http://www.genetests.org/
Association of Public Health Laboratories: Newborn Screening
and Genetics
http://www.aphl.org/Newborn_Screening_Genetics/index.cfm
Centers for Disease Control:
Genetic Testing
http://www.cdc.gov/genomics/gTesting.htm
Centers for Disease Control: Regional and State Genetics Directory
http://www.cdc.gov/genomics/links/regional.htm
Directory of Medical Cytogenetic Laboratories in
Canada
http://www.hrsrh.on.ca/genetics/canlabs.htm
Genetics and Public Policy Center
http://www.dnapolicy.org/genetics/testing.jhtml;$sessionid$ETC3MSIAAAYYUCQBAT3RVQQ
Glossary of Terms
University of Kansas Medical Center
http://www.kumc.edu/gec/glossnew.html
National Human Genome Research
Institute:
http://www.ornl.gov/sci/techresources/Human_Genome/glossary/
National Human Genome Research
Institute: Glossary in Spanish
http://www.genome.gov/sglossary.cfm
Insurance
Georgetown
University Health Policy Institute
http://www.healthinsuranceinfo.net/
Laboratories
Association of Public Health
Laboratories: Newborn Screening and Genetics
http://www.aphl.org/Newborn_Screening_Genetics/index.cfm
GeneTests: A publicly funded
medical genetics information resource developed for physicians, other
healthcare providers, and researchers, available at no cost to all interested
persons.
http://www.genetests.org/
Canadian College of Medical Geneticists: Cytogenetics
http://www.hrsrh.on.ca/genetics/CanCyt/
Directory of Medical Cytogenetic Laboratories in
Canada
http://www.hrsrh.on.ca/genetics/canlabs.htm
Language
Genetic Information Websites in
Spanish for Public Education
http://www.ornl.gov/sci/techresources/Human_Genome/education/spanish.shtml
Legal
Council for Responsible Genetics
(CRG): Genetics and the Law
http://www.genelaw.info/
Genetics and Public Policy Center
http://www.dnapolicy.org/policy/legalIssues.jhtml
Genetic Laws and Legislative Activity (U.S.)
http://www.ncsl.org/programs/health/genetics/charts.htm
National Cancer
Institute: Elements of Cancer Risk Assessment and Counseling: Informed
Consent
http://www.cancer.gov/templates/doc.aspx?viewid=c0fc1ac3-607b-44a5-9d24-39b0a2a4703c&version=HealthProfessional§ionID=1&#Section_89
National Conference of State Legislatures (U.S.): Newborn Genetic and
Metabolic Screening
http://www.ncsl.org/programs/health/genetics/nbs.htm
Prenatal/Neonatal- Professional Resources
American Academy of Pediatrics-
Section on Birth Defects: Policy Statement and Information on Specific
Disorders
http://www.aap.org/healthtopics/birthdefects.cfm
American College of Medical
Genetics Foundation: Evaluation of the Newborn with Single or Multiple
Congenital Anomalies: A Clinical Guideline
http://www.health.state.ny.us/nysdoh/dpprd/index.htm
American College of Obstetricians
and Gynecologists: Committee Opinion on
first-trimester prenatal screening methods for chromosome abnormalities,
including nuchal fold translucency screening. To read more about first
trimester screening and the policy issues surrounding it, visit the Center's
website:
http://www.dnapolicy.org/FirstTrimesterScreening
Association of Public Health Laboratories: Newborn Screening
and Genetics
http://www.aphl.org/Newborn_Screening_Genetics/index.cfm
Catalogue
of Rare Genetic Diseases in Children
http://www.med.nyu.edu/rgdc/disease.htm
Frequency
of Inherited Disorders Database
http://archive.uwcm.ac.uk/uwcm/mg/fidd/
Genetics and Public Policy Center:
Prenatal Genetic Testing
http://www.dnapolicy.org/genetics/prenatal.jhtml
March of Dimes Fact Sheets: These
cover a wide range of prenatal and genetic topics in English and Spanish
http://www.marchofdimes.com/professionals/681_1116.asp
March of Dimes Fact Sheets: Newborn
Screening
http://www.marchofdimes.com/professionals/580.asp
National Newborn Screening and
Genetics Resource Center
http://genes-r-us.uthscsa.edu/
National Conference of State Legislatures (U.S.): Newborn Genetic and
Metabolic Screening
http://www.ncsl.org/programs/health/genetics/nbs.htm
Rare genetic diseases in children
http://www.med.nyu.edu/rgdc/disease.htm
Prenatal/Neonatal- Public Resources
Birth Defect Research for Children
provides parents and expectant parents free fact sheets about the most common
categories of birth defects, the National Birth Defect Registry, and research
resources.
http://www.birthdefects.org/
Canadian Organization for Rare
Disorders
http://www.cord.ca/
Centers for Disease Control: Fact
Sheets (e.g. carrier testing, prenatal diagnosis, etc. including information
about specific genetic diseases and disorders)
http://www.cdc.gov/genomics/public/facts.htm
Cystic Fibrosis Foundation (U.S.):
Directory of care centers and chapters.
http://www.cff.org/chapters_and_care_centers/
Genetic and Rare Diseases
Information Center
http://www.genome.gov/10000409
March of Dimes Pregnancy & Newborn Health Education Center
http://www.marchofdimes.com/pnhec/pnhec.asp
Medline Plus: Genetic Testing
http://www.nlm.nih.gov/medlineplus/genetictesting.html
National Newborn Screening and
Genetics Resource Center
http://genes-r-us.uthscsa.edu/
National Organization for Rare Disorders
http://www.rarediseases.org/
National Conference of State Legislatures (U.S.): Newborn Genetic and
Metabolic Screening
http://www.ncsl.org/programs/health/genetics/nbs.htm
Rare genetic diseases in children
http://www.med.nyu.edu/rgdc/disease.htm
Professional Organizations
American Board of Genetic
Counselors
http://genetics.faseb.org/genetics/abgc_diplomates.html
American Board of Genetic Counseling
http://www.abgc.net/
American Board of Medical Genetics
http://www.abmg.org/
American College of Medical Genetics
http://www.acmg.net/
American Society of Human Genetics
http://genetics.faseb.org/genetics/ashg/ashgmenu.htm
Association of Genetic Technologists
http://www.agt-info.org/
Australasia: The Human Genetics Societies of Australasia:
http://www.hgsa.com.au/
Canadian College of Medical Genetics
http://ccmg.medical.org/
Council of Medical Genetics
Organizations
http://genetics.faseb.org/genetics/ashg/comgo.htm
European Society of Human Genetics
http://www.eshg.org/
Genetics Society of America
http://www.genetics-gsa.org/
International Federation of Human Genetics Societies
http://www.ifhgs.org/
Latin American Network of Human Genetics Societies
http://www.relagh.ufrgs.br/
International Society for Nurses in Genetics
http://www.isong.org/
National Society of Genetic Counselors
http://www.nsgc.org/
National Coalition for Health Professional Education in Genetics
http://www.nchpeg.org/]
National Society of Genetic
Counselors
http://www.nsgc.org/resourcelink.asp
International Federation of Human
Genetics Societies
http://genetics.faseb.org/genetics/ifhgs/
The Coalition of State Genetics
Coordinators (CSGC)
http://www.stategeneticscoordinators.org/
Psychological
American Psychological Association
http://www.apa.org/science/genetics/homepage.html
National Cancer Institute: Elements
of Cancer Risk Assessment and Counseling: Psychological
Impact of Genetic Information/Test Results on the Family
http://www.cancer.gov/templates/doc.aspx?viewid=c0fc1ac3-607b-44a5-9d24-39b0a2a4703c&version=HealthProfessional§ionID=1&#Section_108
Patient and Public Education
Medline Plus: Genetic Testing
http://www.nlm.nih.gov/medlineplus/genetictesting.html
Genetic Disorders: Human Genome
Project Information
http://www.ornl.gov/sci/techresources/Human_Genome/medicine/assist.shtml
Genetic Information Websites in Spanish
for Public Education
http://www.ornl.gov/sci/techresources/Human_Genome/education/spanish.shtml
Human Genome Project: Exploring Our
Molecular Selves: Online Multimedia Education Kit
http://www.genome.gov/Pages/EducationKit/
Medicine and the New Genetics:
Human Genome Project Information
http://www.ornl.gov/sci/techresources/Human_Genome/medicine/medicine.shtml
March of Dimes Pregnancy & Newborn Health Education Center
http://www.marchofdimes.com/pnhec/pnhec.asp
Public Genetics Education: Gene Almanac (produced by Dolan
Learning Center, Cold Springs Harbor, New York)
http://www.dnalc.org/
U.S. Department of Energy Office of
Science
http://www.doegenomes.org/
Public Health
Genomics for Public Health
Practitioners is a 45 minute
introductory presentation on genomics and public health. Resource is intended
for public health practitioners who have minimal experience in the area of
genomics as it pertains to public health.
http://www.cdc.gov/genomics/training/GPHP/default.htm
Centres for Disease Control: Public
Health Perspective: Family History Tools
http://www.cdc.gov/genomics/info/perspectives/famhistr.htm
Secretary’s Advisory Committee on
Genetic Testing (U.S.)
http://www4.od.nih.gov/oba/sacghs/sacghslinks.html
Policy Issues
American College of Medical
Genetics Policy Statements
http://genetics.faseb.org/genetics/acmg/pol-menu.htm
American Society of Human Genetics
Policy Papers and Reports
http://genetics.faseb.org/genetics/ashg/policy/pol-00.htm
Public Issues
The Foundation for Genetic
Education and Counseling (FGEC) is a non-profit organization dedicated to
raising the understanding of human genetics and genetic medicine among the
general public and their health professionals.
http://www.fgec.org/
Foundation for Genetic Medicine
To help create and strengthen a supportive environment for the ethical
development of genetic medicine to improve human health.
http://www.geneticmedicine.org/
Genetics and Public
Policy Center
http://www.dnapolicy.org/
Risk Communication
National Institutes of Health: National Library of Medicine
http://www.nlm.nih.gov/pubs/cbm/health_risk_communication.html
Support Organizations
American Directory of Genetic
Support Groups
http://www.kumc.edu/gec/support/
Birth Defect Research for
Children: Provides parents and
expectant parents free fact sheets about the most common categories of birth
defects, the National Birth Defect Registry, and research resources.
http://www.birthdefects.org/
Canadian Directory of Genetic Support Groups
http://www.lhsc.on.ca/programs/medgenet/
Canadian Organization for Rare
Disorders
http://www.cord.ca/
Cystic Fibrosis Foundation (U.S.):
Directory of care centers and chapters.
http://www.cff.org/chapters_and_care_centers/
Genetic Alliance (U.S.)
http://www.geneticalliance.org/
March of Dimes
http://www.marchofdimes.com/
National Newborn Screening and
Genetics Resource Center
http://genes-r-us.uthscsa.edu/
National Organization for Rare Disorders
http://www.rarediseases.org/
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