|
|
|
Adult Family History Form
|
|
American Medical Association
|
|
2004
|
|
www.ama-assn.org/ama1/pub/upload/mm/464/adult_history.pdf
|
|
This information may be useful to
your doctor prior to an appointment.
|
|
|
|
Adults with Congenital Heart Disease
|
|
American Heart Association
|
|
2004
|
|
www.americanheart.org/presenter.jhtml?identifier=11062
|
|
Adults with congenital heart diseases may have questions relating to employment, insurance, physical activity and childbearing. They must deal with ongoing care needs, treatment, and medical problems.
|
|
|
|
Alphabetic List of Specific Diseases/Disorders
|
|
Karolinska Institute University Library, Stockholm, Sweden
|
|
2009
|
|
www.mic.ki.se/Diseases/Alphalist.html
|
|
Links to free online resources dealing with genetic diseases and birth defects.
|
|
|
|
Alzheimer Disease
|
|
Genetics Home Reference
|
|
2008
|
|
ghr.nlm.nih.gov/condition=alzheimerdisease
|
|
|
|
Alzheimer's Disease
|
|
Lab Tests Online
|
|
2005
|
|
www.labtestsonline.org/understanding/conditions/alzheimers.html
|
|
|
|
Alzheimer's Disease
|
|
Dolan DNA Learning Center, Cold Spring Harbor Laboratory
|
|
2002
|
|
www.ygyh.org/alz/whatisit.htm
|
|
Definition, cause, symptoms, treatment, incidence, testing, screening and much more.
|
|
|
|
Alzheimer's Disease Genetics Fact Sheet
|
|
Alzheimer's Disease Education & Referral Center/National Institute on Aging
|
|
2009
|
|
www.nia.nih.gov/Alzheimers/Publications/geneticsfs.htm
|
|
.
|
|
|
|
ApoE Genotyping
|
|
Lab Tests Online
|
|
2005
|
|
www.labtestsonline.org/understanding/analytes/apoe/test.html
|
|
Sometimes used as an adjunct test to help in the diagnosis of probable late onset Alzheimers disease (AD) in symptomatic adults.
|
|
|
|
Atherosclerosis
|
|
Genes and Disease, National Center for Biotechnology Information
|
|
no date
|
|
www.ncbi.nlm.nih.gov/books/bv.fcgi?call=bv.View..ShowSection&rid=gnd.section.141
|
|
|
|
Attention Deficit Hyperactivity Disorder; ADHD
|
|
Online Mendelian Inheritance in Man
|
|
2008
|
|
www.ncbi.nlm.nih.gov/entrez/dispomim.cgi?id=143465
|
|
|
|
Beta Thalassemia
|
|
Dolan DNA Learning Center, Cold Spring Harbor Laboratory
|
|
2002
|
|
www.ygyh.org/thal/whatisit.htm
|
|
Definition, cause, symptoms, treatment, incidence, testing, screening and much more.
|
|
|
|
Beyond Therapy: Biotechnology
and the Pursuit of Happiness, Chapter 4: Ageless Bodies
|
|
President's Council on Bioethics
|
|
2003
|
|
www.bioethics.gov/reports/beyondtherapy/chapter4.html
|
|
Discusses biotechnology's potential impact on the aging process and societal and ethical concerns of living longer lives.
|
|
|
|
Beyond Therapy: Biotechnology and the Pursuit of Happiness, Chapter 3: Superior Performance
|
|
President's Council on Bioethics
|
|
2003
|
|
www.bioethics.gov/reports/beyondtherapy/chapter3.html
|
|
Ethics and societal implications of using biotechnology to enhance athletic performance.
|
|
|
|
Beyond Therapy: Biotechnology and the Pursuit of Perfection, Chapter 2: Better Children
|
|
President's Council on Bioethics
|
|
2003
|
|
www.bioethics.gov/reports/beyondtherapy/chapter2.html
|
|
Chapter discusses ethical and social issues of so-called designer babies and for drug-enhanced children.
|
|
|
|
Bietti's Crystalline Dystrophy
|
|
National Eye Institute
|
|
2008
|
|
www.nei.nih.gov/health/biettis/index.asp
|
|
Bietti's crystalline dystrophy (BCD) is a rare inherited eye disease that appears to be more common in people with Asian ancestry.
|
|
|
|
Blazing a Genetic Trail
|
|
Howard Hughes Medical Institute
|
|
2002
|
|
www.hhmi.org/genetictrail/
|
|
Explains the genetics of cystic fibrosis and some of the techniques used to isolate the CFTR gene and progress in treating/curing the disease.
|
|
|
|
Bone Marrow Disorders
|
|
Lab Tests Online
|
|
2008
|
|
www.labtestsonline.org/understanding/conditions/bone_marrow_disorders.html
|
|
Laboratory tests for bone marrow disorders, including myeloproliferative and myelodysplastic disorders.
|
|
|
|
Breast and Ovarian Cancer
|
|
National Center for Biotechnology Information
|
|
www.ncbi.nlm.nih.gov/books/bv.fcgi?call=bv.View..ShowSection&rid=gnd.section.99
|
|
Brief history and recent developments in BRCA1 and BRCA2
|
|
|
|
Breast Cancer
|
|
Lab Tests Online
|
|
2008
|
|
www.labtestsonline.org/understanding/conditions/breast.html
|
|
Laboratory tests that can be performed to diagnose and monitor breast cancer and its treatment, including the tests for the genetic markers of breast cancer..
|
|
|
|
Can Heart and Blood Vessel Disease Be Inherited?
|
|
American Heart Association
|
|
www.americanheart.org/presenter.jhtml?identifier=4610
|
|
Brief discussion of heredity as a risk factor in blood vessels, heart disease, high blood pressure and stroke.
|
|
|
|
Cancer Clusters
|
|
National Cancer Institute
|
|
2006
|
|
cis.nci.nih.gov/fact/pdfdraft/3_risk/fs3_58.pdf
|
|
Cancer clusters, how they are defined, gene-environment interactions, and cancer risk.
|
|
|
|
Cancer Facts: DES Questions and Answers
|
|
National Cancer Institute
|
|
2006
|
|
cis.nci.nih.gov/fact/pdfdraft/3_risk/fs3_4.pdf
|
|
Diethylstilbestrol has been linked to an uncommon cancer (clear cell adenocarcinoma) of the vagina or cervix in a small number of daughters of women who used DES. Women who used DES and may have a slightly increased risk of breast cancer.
|
|
|
|
CancerQuest
|
|
Emory University
|
|
2009
|
|
www.cancerquest.org
|
|
Website is designed so those without a biology background can understand basic concepts in tumor biology. Well-written and illustrated, good explanation of cell structure, DNA, RNA, and proteins, cell division, and genetic change before covering cancer genes, tumor biology, treatment, research and clinical trials.
|
|
|
|
Center for Genetics and Society
|
|
Center for Genetics and Society
|
|
No date
|
|
www.genetics-and-society.org/index.asp
|
|
Nonprofit information and public affairs organization working to encourage responsible uses and effective societal governance of the new human genetic and reproductive technologies.
|
|
|
|
Chemistry and Biology: Partners in Decoding the Genome
|
|
National Human Genome Research Institute
|
|
2004
|
|
www.genome.gov/11008534
|
|
Webcast Symposium highlighted the National Institutes of Health (NIH) and the larger biomedical research community's scientific insights resulting from the application of modern chemical approaches to the study of important problems in biology and genomics
|
|
|
|
Chromosome Abnormalities
|
|
National Human Genome Research Institute
|
|
2004
|
|
www.genome.gov/11508982
|
|
Focuses on the types of chromosomal abnormalities, numerical and structural.
|
|
|
|
Chronic Myeloid Leukemia
|
|
Genes and Disease, National Center for Biotechnology Information
|
|
no date
|
|
www.ncbi.nlm.nih.gov/books/bv.fcgi?call=bv.View..ShowSection&rid=gnd.section.101
|
|
Chronic myeloid leukemia or CML, usually diagnosed by finding a chromosomal abnormality called the Philadelphia chromosome, the result of a translocation between the long arms of chromosomes 9 and 22, which brings together two genes, BCR and the ABL proto-oncogene.
|
|
|
|
Colon Cancer
|
|
Lab Tests Online
|
|
2002
|
|
www.labtestsonline.org/understanding/conditions/colon.html
|
|
Laboratory tests for colon cancer.
|
|
|
|
Council for Responsible Genetics
|
|
Council for Responsible Genetics
|
|
2004
|
|
www.gene-watch.org/index.html
|
|
Advances the public interest in biotechnology and genetics social, ethical and environmental consequences.
|
|
|
|
Cystic Fibrosis
|
|
Lab Tests Online
|
|
2009
|
|
www.labtestsonline.org/understanding/conditions/cystic_fibrosis.html
|
|
Laboratory tests for cystic fibrosis.
|
|
|
|
Cystic Fibrosis
|
|
Dolan DNA Learning Center, Cold Spring Harbor Laboratory
|
|
2002
|
|
www.ygyh.org/cf/whatisit.htm
|
|
Definition, cause, symptoms, treatment, incidence, testing, screening and much more.
|
|
|
|
Cytogenetics and Chromosome Analysis
|
|
Lab Tests Online
|
|
2005
|
|
www.labtestsonline.org/understanding/features/genetics-8.html
|
|
Cytotechnologists look at slide preparations of chromosomes to determine if there are extra chromosomes or if parts of the chromosomes are missing or rearranged.
|
|
Audience: parents and adults
not physicians
|
|
|
|
Dictionary of Genetic Terms
|
|
Dept of Energy Human Genome Project
|
|
2007
|
|
www.ornl.gov/sci/techresources/Human_Genome/publicat/primer2001/glossary.shtml
|
|
|
|
Direct to Consumer Marketing consumer Alert by the Federal Trade Commission
|
|
Secretary's Advisory Committee on Genetics, Health, and Society (SACGHS)
|
|
2006
|
|
oba.od.nih.gov/oba/sacghs/reports/DTC_Consumer_Alert_Jul06.pdf
|
|
FTC guide to at-home genetic testing.
|
|
|
|
DNA Forensics
|
|
Human Genome Project
|
|
2008
|
|
www.ornl.gov/sci/techresources/Human_Genome/elsi/forensics.shtml
|
|
A guide to resources on DNA topics.
|
|
|
|
Do You Have Cancer in Your Family?
|
|
Pacific Northwest Regional Genetics Group
|
|
2007
|
|
mchneighborhood.ichp.edu/pacnorgg/media/CANCER.pdf
|
|
This brochure answers some basic questions about inherited cancers and genetic testing.
|
|
|
|
Down Syndrome
|
|
Dolan DNA Learning Center, Cold Spring Harbor Laboratory
|
|
2002
|
|
www.ygyh.org/ds/whatisit.htm
|
|
Definition, cause, symptoms, treatment, incidence, testing, screening and much more.
|
|
|
|
Duchenne/Becker Muscular Dystrophy
|
|
Dolan DNA Learning Center, Cold Spring Harbor Laboratory
|
|
2002
|
|
www.ygyh.org/dmd/whatisit.htm
|
|
Definition, cause, symptoms, treatment, incidence, testing, screening and much more.
|
|
|
|
Ethical, Legal and Social Implications (ELSI) Research Program
|
|
National Human Genome Research Institute
|
|
2009
|
|
www.nhgri.nih.gov/10001618
|
|
The ELSI Program was established in 1990 by the architects of the Human Genome Project to anticipate and address the ethical, legal and social issues that arise as the result of human genetic research. This website provides information on the history of ELSI, the kinds of issues and activities in which ELSI is involved, ELSI research and education opportunities at the NHGRI and other related publications and resources.
|
|
|
|
Ethical, Legal, and Social Issues
|
|
U.S. Department of Energy, Human Genome Program
|
|
2008
|
|
www.ornl.gov/sci/techresources/Human_Genome/elsi/elsi.shtml
|
|
Societal concerns about the uses of genetic information from the Human Genome Project.
|
|
|
|
Evaluating Gene Tests
|
|
Human Genome Project
|
|
2008
|
|
www.ornl.gov/sci/techresources/Human_Genome/resource/testeval.shtml
|
|
Considerations include test quality, the potential usefulness of the information the test provides, available preventive or treatment options, and social issues.
|
|
|
|
Exploring Genetic Issues Relevant to Minorities
|
|
Oak Ridge National Laboratory, Human Genome Management Information System
|
|
2003
|
|
www.ornl.gov/sci/techresources/Human_Genome/publicat/MinorityConcerns-82.pdf
|
|
Two page PDF file describing Department of Energy (DOE) Minority Projects, and a list of 13 issues and benefits for minorities emanating from the Human Genome Project. sponsored by the Human Genome Program of the U.S. Department of Energy. Includes "more information on the web" section.
|
|
|
|
Fact Sheet on Genetic Testing for Breast and Ovarian Cancer Susceptibility
|
|
Centers for Disease Control
|
|
2007
|
|
www.cdc.gov/genomics/training/perspectives/breastcancer.htm
|
|
Genetic testing for hereditary susceptibility for breast and ovarian cancer is the first genetic test to be marketed directly to consumers. This explains the background of the testing and provides decision making support.
|
|
|
|
Familial Testicular Cancer
|
|
National Cancer Institute
|
|
familial-testicular-cancer.cancer.gov/index.html
|
|
Familial testicular cancer is rare. It is estimated to account for 1-3% of all testicular cancers.
|
|
|
|
Family History of Alcoholism: Are You at Risk?
|
|
National Institute on Alcohol Abuse and Alcoholism
|
|
2005
|
|
pubs.niaaa.nih.gov/publications/FamilyHistory/Family%20History.pdf
|
|
Discusses risk factors of those who have relatives who are alcoholics.
|
|
|
|
Family History Tree
|
|
American Heart Association
|
|
www.americanheart.org/downloadable/heart/1225923292741HOD%20Family%20Tree.pdf
|
|
A free registration site that allows you to construct and maintain your family medical history. Allows you to send an e-card to family members when you need information from them.
|
|
|
|
FAQs about Genetic Counselors and the NSGC
|
|
National Society of Genetic Counseling
|
|
2009
|
|
www.nsgc.org/about/faq.cfm
|
|
Frequently Asked Questions about Genetic Counselors and the National Society of Genetic Counselors.
|
|
|
|
Find a Genetic Counselor
|
|
National Society of Genetic Counselors
|
|
2009
|
|
www.nsgc.org/resourcelink.cfm
|
|
Assists consumers in locating genetic counselors. Genetic Counselors can be searched by State, City, Counselor's Name, Institution or Areas of Practice or Specialization.
|
|
|
|
Frequently Asked Questions (About Stem Cells)
|
|
National Institutes of Health
|
|
2009
|
|
stemcells.nih.gov/info/faqs.asp
|
|
|
|
Gene Testing
|
|
Human Genome Project
|
|
2003
|
|
www.ornl.gov/sci/techresources/Human_Genome/medicine/genetest.shtml
|
|
Gene tests involve direct examination of the DNA molecule.
|
|
|
|
Gene Therapy
|
|
Human Genome Project
|
|
2009
|
|
www.ornl.gov/sci/techresources/Human_Genome/medicine/genetherapy.shtml
|
|
What is gene therapy?
|
|
|
|
Gene Therapy
|
|
American Medical Association
|
|
2009
|
|
www.ama-ashttp://www.ama-assn.org/ama/pub/physician-resources/medical-science/genetics-molecular-medicine/current-topics/gene-therapy.shtmlsn.org/ama/pub/category/8432.html
|
|
Addresses how gene therapy works, what diseases could be treated, has gene therapy been successfully used in humans, and can genetic alterations from gene therapy be passed on to children?
|
|
Mostly for public
|
|
|
|
Gene Therapy for Cancer: Questions and Answers
|
|
National Cancer Institute
|
|
2006
|
|
www.cancer.gov/cancertopics/factsheet/Therapy/Gene
|
|
Frequently asked questions about gene therapy for cancer.
|
|
|
|
Gene-Environment Interaction Fact Sheet
|
|
Centers for Disease Control
|
|
2007
|
|
/www.cdc.gov/genomics/training/perspectives/factshts/geneenviro.htm
|
|
Almost all human diseases result from the interaction of genetic susceptibility factors and modifiable environmental factors, which include infectious, chemical, physical, nutritional, and behavioral factors.
|
|
|
|
Genetic Discrimination in Health Insurance or Employment
|
|
National Human Research Genome Institute
|
|
2009
|
|
www.genome.gov/11510227
|
|
Links to federal policy, federal legislation, state legislation.
|
|
|
|
Genetic Disease Information --pronto!
|
|
Human Genome Project
|
|
2008
|
|
www.ornl.gov/sci/techresources/Human_Genome/medicine/assist.shtml
|
|
Basics of Genetic Disorders
|
|
|
|
Genetic Information Non-Discrimination Act of 2003 (S.1053)(Summary)
|
|
National Human Genome Research Institute
|
|
2008
|
|
www.genome.gov/11508845
|
|
On October 14, 2003, the U.S. Senate (95-0) passed the Genetic Information Non-Discrimination Act of 2003 (S.1053), prohibiting discrimination on the basis of genetic information in health insurance and the workplace. The U.S. House of Representatives is now considering this legislation (as of 9/04).
|
|
|
|
Genetic Privacy and Legislation
|
|
Human Genome Program, Office of Biological and Environmental Research, U.S. Department of Energy
|
|
2008
|
|
www.ornl.gov/sci/techresources/Human_Genome/elsi/legislat.shtml
|
|
|
|
Genetic Testing for BRCA1 and BRCA2: It's Your Choice
|
|
National Cancer Institute
|
|
2002
|
|
cis.nci.nih.gov/fact/3_62.htm
|
|
Pros and cons of getting tested, possible outcomes positive, negative, ambiguous, strategies for dealing with a positive test, genetic discrimination.
|
|
|
|
Genetic Tools and Techniques
|
|
MicrobeWorld, American Society for Microbiology
|
|
2006
|
|
www.microbeworld.org/microbes/tools.aspx
|
|
Basic, illustrated explanations of polymerase chain reaction, gene sequencing, and DNA microarrays or "gene chips."
|
|
Lay persons
|
|
|
|
Genetically Modified Foods and Organisms
|
|
Human Genome Project
|
|
2008
|
|
www.ornl.gov/sci/techresources/Human_Genome/elsi/gmfood.shtml
|
|
Although "biotechnology" and "genetic modification" commonly are used interchangeably, GM is a special set of technologies that alter the genetic makeup of such living organisms as animals, plants, or bacteria. Biotechnology, a more general term, refers to using living organisms or their components, such as enzymes, to make products that include wine, cheese, beer, and yogurt.
Combining genes from different organisms is known as recombinant DNA technology, and the resulting organism is said to be "genetically modified," "genetically engineered," or "transgenic." GM products (current or in the pipeline) include medicines and vaccines, foods and food ingredients, feeds, and fibers.
|
|
|
|
Genetics Home Reference: What is Gene Therapy?
|
|
National Library of Medicine
|
|
2009
|
|
ghr.nlm.nih.gov/info=gene_therapy;jsessionid=78602A39A2CCD0F57249CBC88C8E22D4?section=toc
|
|
|
|
Genetics 101: DNA Mutations
|
|
GeneticHealth
|
|
2001
|
|
www.genetichealth.com/G101_Changes_in_DNA.shtml
|
|
Describes point, frame-shift, deletion, insertion, inversion, and expression mutations.
|
|
|
|
Genetics and Cancer
|
|
People Living with Cancer, American Society of Clinical Oncologists
|
|
2005
|
|
www.cancer.net/patient/ASCO+Resources/Ask+the+ASCO+Expert+Series/2005+Transcripts/Genetics+and+Cancer
|
|
Introduction to the role genes and genetics play in cancer.
|
|
|
|
Genetics Disorders Library
|
|
Genetic Science Learning Center, University of Utah
|
|
2009
|
|
learn.genetics.utah.edu/content/disorders/whataregd/
|
|
Abnormalities can range from a small mutation in a single gene to the addition or subtraction of an entire chromosome or set of chromosomes. To learn more about different genetic disorders, browse through the Genetic Disorder Library.
|
|
|
|
Genetics Home Reference
|
|
National Library of Medicine
|
|
2009
|
|
ghr.nlm.nih.gov/ghr/page/Home
|
|
The National Library of Medicine's web site for consumer information about genetic conditions and the genes responsible for those conditions.
|
|
|
|
Genetics Home Reference: Bladder Cancer
|
|
National Library of Medicine
|
|
2007
|
|
ghr.nlm.nih.gov/condition=bladdercancer;jsessionid=BFD0EC2D5B523E1B153EAF7AA079D471
|
|
Brief description of the genetics of bladder cancer. Increased risk associated with mutations in RB1 gene. Associated with bladder cancer FGFR3, HRAS, and TP53 genes.
|
|
|
|
Genetics Home Reference: Breast Cancer
|
|
National Library of Medicine
|
|
2007
|
|
ghr.nlm.nih.gov/condition=breastcancer;jsessionid=BFD0EC2D5B523E1B153EAF7AA079D471
|
|
Genetics of breast cancer, increased risk from ATM, BRCA1, BRCA2, and RAD51 genes. Breast Cancer associated with ARHI and ERBB2 genes.
|
|
|
|
Genetics Home Reference: Genetic Consultation
|
|
National Library of Medicine
|
|
ghr.nlm.nih.gov/info=consultation;jsessionid=78602A39A2CCD0F57249CBC88C8E22D4?section=toc
|
|
|
|
Genetics Home Reference: Genetic Testing
|
|
National Library of Medicine
|
|
ghr.nlm.nih.gov/info=genetic_testing;jsessionid=78602A39A2CCD0F57249CBC88C8E22D4?section=toc
|
|
|
|
Genetics Home Reference: Help Me Understand Genetics
|
|
Understanding Gene Testing
|
|
ghr.nlm.nih.gov/info=understandGenetics;jsessionid=78602A39A2CCD0F57249CBC88C8E22D4
|
|
Basic introduction to genetics, genes and how they work, genetic disorders, genetic consultation, genetic testing, gene therapy, and the Human Genome Project and Genomic Research.
|
|
|
|
Genetics Home Reference: Human Genome Project and Genomic Research
|
|
National Library of Medicine
|
|
2009
|
|
ghr.nlm.nih.gov/info=genomic_research;jsessionid=78602A39A2CCD0F57249CBC88C8E22D4?section=toc
|
|
|
|
Genetics Home Reference: Retinoblastoma
|
|
National Library of Medicine
|
|
2005
|
|
ghr.nlm.nih.gov/condition=retinoblastoma;jsessionid=BFD0EC2D5B523E1B153EAF7AA079D471
|
|
|
|
Genetics Home Reference: Sickle Cell Anemia
|
|
National Library of Medicine
|
|
2007
|
|
ghr.nlm.nih.gov/condition=sicklecellanemia
|
|
|
|
Genetics of Diabetes
|
|
American Diabetes Association
|
|
www.diabetes.org/genetics.jsp
|
|
Type 1 and Type 2 diabetes risk, and your child's Type 1 and Type 2 diabetes risks, discussion on what "risk" means, and section on whether or not one should consider joining a study.
|
|
|
|
Genome News Network
|
|
Center for the Advancement of Genomics (TCAG)
|
|
Every other week
|
|
www.genomenewsnetwork.org
|
|
Online magazine published by the Center for the Advancement of Genomics (TCAG), and published on a biweekly basis. Covers human medicine, agriculture, microbes, biotechnology.
|
|
|
|
Genome Variations
|
|
Genome News Network
|
|
2003
|
|
www.genomenewsnetwork.org/resources/whats_a_genome/Chp4_1.shtml
|
|
Genome variations include mutations (if less than 1% of the people have it) and polymorphisms (1% or more of the people have the variation). About 90% of human genome variation come from single nucleotide polymorphisms (SNPs pronounced "snips") involving just one nucleotide (A,T,G or C).
|
|
|
|
Glosario de Términos Genéticos
|
|
National Human Genome Research Institute
|
|
No Date
|
|
www.genome.gov/sglossary.cfm
|
|
Glosario hablado de términos de genética para ayudar a las personas que no tienen conocimientos científicos a entender los términos y conceptos utilizados en la investigación en genética.
|
|
|
|
Hemochromatosis
|
|
Dolan DNA Learning Center, Cold Spring Harbor Laboratory
|
|
2002
|
|
www.ygyh.org/hc/whatisit.htm
|
|
Definition, cause, symptoms, treatment, incidence, testing, screening and much more.
|
|
|
|
Hemochromatosis
|
|
Lab Tests Online
|
|
2006
|
|
www.labtestsonline.org/understanding/conditions/hemochrom.html
|
|
Laboratory tests for hemochromatosis.
|
|
|
|
Hemophilia
|
|
Dolan DNA Learning Center, Cold Spring Harbor Laboratory
|
|
2002
|
|
www.ygyh.org/hemo/whatisit.htm
|
|
Definition, cause, symptoms, treatment, incidence, testing, screening and much more.
|
|
|
|
Hemophilia Treatment Centers
|
|
National Center on Birth Defects and Developmental Disabilities, Hereditary Blood Disorders
|
|
2005
|
|
www.cdc.gov/ncbddd/hbd/htc_list.htm
|
|
Centers for Disease Control (CDC) supports a network of specialized health-care centers to prevent and reduce complications experienced by persons with certain hereditary blood disorders. Hemophilia is an inherited bleeding disorder that affects 18,000 persons (primarily males) in the United States. The most common bleeding disorder is von Willebrand disease (vWD), which is found in approximately 1-2% of the U.S. population.
|
|
|
|
Hemostasis and Thrombosis Centers
|
|
Centers for Disease Control
|
|
2005
|
|
www.cdc.gov/ncbddd/hbd/thromb_center_list.htm
|
|
Treatment center directory for hereditary hemostatis and thrombosis.
|
|
|
|
How Does Gene Therapy Work?
|
|
American Cancer Society
|
|
2007
|
|
www.cancer.org/docroot/ETO/content/ETO_1_4X_How_Does_Gene_Therapy_Work.asp
|
|
Gene therapy can be used to treat cancer.
|
|
|
|
Huntington's Disease
|
|
Dolan DNA Learning Center, Cold Spring Harbor Laboratory
|
|
2002
|
|
www.ygyh.org/hd/whatisit.htm
|
|
Definition, cause, symptoms, treatment, incidence, testing, screening and much more.
|
|
|
|
Identity Testing
|
|
Lab Tests Online
|
|
2005
|
|
www.labtestsonline.org/understanding/features/genetics-5.html
|
|
Identity testing focuses on the identification of an individual through the analysis of either nuclear or mitochondrial DNA extracted from some material: blood, tissue, hair, bone, etc. Any material that contains cells with nuclei can be used for nuclear DNA extraction and eventual identity testing. This process is used for criminal investigations, to identify remains that cannot be identified by normal means, and establishing relationships such as parentage.
|
|
|
|
Illustrated Glossary
|
|
GeneTests
|
|
2009
|
|
www.genetests.org/servlet/access?qry=ALLTERMS&db=genestar&fcn=term>report2=true&id=8888891&key=jp8mdIjNWhdil
|
|
|
|
Infectious Disease Testing
|
|
Lab Tests Online
|
|
2005
|
|
www.labtestsonline.org/understanding/features/genetics-9.html
|
|
|
|
Inheritable Genetic Modification (IGM)
|
|
Center for Genetics and Society
|
|
2009
|
|
www.genetics-and-society.org/technologies/igm/index.html
|
|
The basic science behind inheritable genetic modification, arguments for and against, and frequently asked questions.
|
|
|
|
Inherited Colorectal Cancer Registries
|
|
American Society of Colon and Rectal Surgeons
|
|
2009
|
|
www.fascrs.org/patients/family_history_registries/
|
|
Links to registries across the United States.
|
|
|
|
Is Pancreatic Cancer Hereditary?
|
|
Johns Hopkins Pathology
|
|
2009
|
|
pathology.jhu.edu/pancreas/BasicHeredity.php?area=ba
|
|
It has been estimated that ten percent of pancreatic cancers are hereditary. Many of these occur as part of rare medical syndromes.
|
|
|
|
Lab Tests Online
|
|
American Association for Clinical Chemistry
|
|
2009
|
|
www.labtestsonline.org
|
|
Lab Tests Online has been designed to help patients to better understand clinical lab tests that are part of routine care as well as diagnosis and treatment.
|
|
|
|
Largest-Ever Search for Autism Genes Reveals New Clues
|
|
National Institute of Child Health & Human Development
|
|
2007
|
|
www.nichd.nih.gov/news/releases/autism_gene_reveals_clues.cfm
|
|
|
|
Learning About Breast Cancer
|
|
National Human Genome Research Institute
|
|
2009
|
|
www.genome.gov/10000507
|
|
Short review on heredity of breast cancer and testing. Features links to other sites and links to current research at the National Human Genome Research Institute.
|
|
|
|
Learning About Colon Cancer
|
|
National Human Genome Research Institute
|
|
2009
|
|
www.genome.gov/10000466
|
|
Majority of colon cancers are not hereditary. Several genes are involved with familial adenomatous polyposis (FAP) and hereditary nonpolyposis colorectal cancer (HNPCC). Limitations of testing for hereditary colon cancer.
|
|
|
|
Learning About Prostate Cancer
|
|
National Human Genome Research Institute
|
|
2009
|
|
www.genome.gov/10003559
|
|
Brief description about prostate cancer and links to National Human Genome Research Institute research.
|
|
|
|
Learning About Skin Cancer
|
|
National Human Genome Research Institute
|
|
2009
|
|
/www.genome.gov/10000184
|
|
|
|
Leukemia
|
|
Lab Tests Online
|
|
2006
|
|
www.labtestsonline.org/understanding/conditions/leukemia.html
|
|
Laboratory tests for leukemia.
|
|
|
|
Location of Potential Familial Lung Cancer Gene Discovered
|
|
National Cancer Institute
|
|
2004
|
|
www.nci.nih.gov/newscenter/pressreleases/lungcancerlocus
|
|
|
|
Looking at My Genes: What Can They Tell Me?
|
|
National Institute of Mental Health
|
|
2008
|
|
www.nimh.nih.gov/health/publications/looking-at-my-genes-what-can-they-tell-me/index.shtml
|
|
Frequently Asked Questions About Genome Scans and Genetic Testing
|
|
|
|
Lymphoma
|
|
Lab Tests Online
|
|
2007
|
|
www.labtestsonline.org/understanding/conditions/lymphoma.html
|
|
Laboratory tests for lymphoma.
|
|
|
|
Malignant Melanoma
|
|
Genes and Disease, National Center for Biotechnology Information
|
|
no date
|
|
www.ncbi.nlm.nih.gov/books/bv.fcgi?call=bv.View..ShowSection&rid=gnd.section.104
|
|
|
|
Marfan Syndrome
|
|
Dolan DNA Learning Center, Cold Spring Harbor Laboratory
|
|
2002
|
|
www.ygyh.org/marfan/whatisit.htm
|
|
Definition, cause, symptoms, treatment, incidence, testing, screening and much more.
|
|
|
|
Medicine and the New Genetics
|
|
Human Genome Project Information
|
|
2008
|
|
www.ornl.gov/sci/techresources/Human_Genome/medicine/medicine.shtml
|
|
Genetics is playing an increasingly important role in the diagnosis, monitoring, and treatment of diseases.
|
|
|
|
MedlinePlus: Charcot-Marie-Tooth Syndrome
|
|
National Library of Medicine
|
|
www.nlm.nih.gov/medlineplus/charcotmarietoothdisease.html
|
|
|
|
MedlinePlus: Cloning
|
|
National Library of Medicine
|
|
www.nlm.nih.gov/medlineplus/cloning.html
|
|
|
|
MedlinePlus: Ehlers-Danlos Syndrome
|
|
National Library of Medicine
|
|
www.nlm.nih.gov/medlineplus/ehlersdanlossyndrome.html
|
|
|
|
MedlinePlus: Fragile X Syndrome
|
|
National Library of Medicine
|
|
www.nlm.nih.gov/medlineplus/fragilexsyndrome.html
|
|
|
|
MedlinePlus: Gaucher's Disease
|
|
National Library of Medicine
|
|
www.nlm.nih.gov/medlineplus/gauchersdisease.html
|
|
|
|
MedlinePlus: Genetic Brain Disorders
|
|
National Library of Medicine
|
|
www.nlm.nih.gov/medlineplus/geneticbraindisorders.html
|
|
|
|
MedlinePlus: Huntington's Disease
|
|
National Library of Medicine
|
|
www.nlm.nih.gov/medlineplus/huntingtonsdisease.html
|
|
Huntington's disease (HD) results from genetically programmed degeneration of brain cells, called neurons, in certain areas of the brain. This degeneration causes uncontrolled movements, loss of intellectual faculties, and emotional disturbance.
|
|
|
|
MedlinePlus: Metabolic Disorders
|
|
National Library of Medicine
|
|
www.nlm.nih.gov/medlineplus/metabolicdisorders.html
|
|
|
|
MedlinePlus: Muscular Dystrophy
|
|
National Library of Medicine
|
|
www.nlm.nih.gov/medlineplus/musculardystrophy.html
|
|
The muscular dystrophies (MD) are a group of genetic diseases characterized by progressive weakness and degeneration of the skeletal muscles which control movement. There are many forms of muscular dystrophy, some noticeable at birth (congenital muscular dystrophy), others in adolescence (Becker MD), but the 3 most common types are Duchenne, facioscapulohumeral, and myotonic.
|
|
|
|
MedlinePlus: Neurofibromatosis
|
|
National Library of Medicine
|
|
www.nlm.nih.gov/medlineplus/neurofibromatosis.html
|
|
The neurofibromatoses are genetic disorders of the nervous system that primarily affect the development and growth of neural (nerve) cell tissues. These disorders cause tumors to grow on nerves and produce other abnormalities such as skin changes and bone deformities.
|
|
|
|
MedlinePlus: Osteogenesis Imperfecta
|
|
National Library of Medicine
|
|
www.nlm.nih.gov/medlineplus/osteogenesisimperfecta.html
|
|
|
|
MedlinePlus: Prader-Willi Syndrome
|
|
National Library of Medicine
|
|
www.nlm.nih.gov/medlineplus/praderwillisyndrome.html
|
|
PWS is a complex genetic disorder that typically causes low muscle tone, short stature, incomplete sexual development, cognitive disabilities, problem behaviors, and a chronic feeling of hunger that can lead to excessive eating and life-threatening obesity.
|
|
|
|
MedlinePlus: Spinal Muscular Atrophy
|
|
National Library of Medicine
|
|
www.nlm.nih.gov/medlineplus/spinalmuscularatrophy.html
|
|
Spinal muscular atrophy (SMA) is a genetic, motor neuron disease caused by progressive degeneration of motor neurons in the spinal cord. The disorder causes weakness and wasting of the voluntary muscles.
|
|
|
|
MedlinePlus: Tourette Syndrome
|
|
National Library of Medicine
|
|
www.nlm.nih.gov/medlineplus/tourettesyndrome.html
|
|
Tourette syndrome (TS) is an inherited, neurological disorder characterized by multiple involuntary movements and uncontrollable vocalizations called tics that come and go over years. In a few cases, such tics can include inappropriate words and phrases.
|
|
|
|
MedlinePlus: Tuberous Sclerosis
|
|
National Library of Medicine
|
|
www.nlm.nih.gov/medlineplus/tuberoussclerosis.html
|
|
A multi-system genetic disease that causes benign tumors to grow in the brain and on other vital organs such as the kidneys, heart, eyes, lungs, and skin.
|
|
|
|
MedlinePlus: Turner's Syndrome
|
|
National Library of Medicine
|
|
www.nlm.nih.gov/medlineplus/turnerssyndrome.html
|
|
Turner syndrome is a chromosomal condition that exclusively affects girls and women. It occurs when one of the two X chromosomes normally found in females is missing or incomplete.
|
|
|
|
MedlinePlus: Wilson's Disease
|
|
National Library of Medicine
|
|
www.nlm.nih.gov/medlineplus/wilsonsdisease.html
|
|
Wilson's disease is an inherited disorder in which excessive amounts of copper accumulate in the body.
|
|
|
|
My Family Health Portrait Download
|
|
US Dept of Health & Human Services
|
|
familyhistory.hhs.gov/fhh-web/home.action
|
|
Download the free My Family Health Portrait software.
|
|
|
|
National Cooperative Study of Hereditary Prostate Cancer in African-Americans
|
|
National Human Genome Research Institute
|
|
2009
|
|
www.genome.gov/10002040
|
|
healthcare professionals
|
|
|
|
Neurofibromatosis
|
|
Dolan DNA Learning Center, Cold Spring Harbor Laboratory
|
|
2002
|
|
www.ygyh.org/nf/whatisit.htm
|
|
Definition, cause, symptoms, treatment, incidence, testing, screening and much more.
|
|
|
|
Nova Online: Cracking the Code of Life
|
|
Nova, Produced by WGBH for PBS
|
|
2001
|
|
www.pbs.org/wgbh/nova/genome
|
|
he companion Web site to "Cracking the Code of Life," originally broadcast on April 17, 2001.
|
|
|
|
Oncogenes and Tumor Suppressor Genes
|
|
American Cancer Society
|
|
2005
|
|
www.cancer.org/docroot/ETO/content/ETO_1_4x_oncogenes_and_tumor_suppressor_genes.asp
|
|
Oncogenes are mutated forms of genes that cause normal cells to grow out of control and become cancer cells.
Tumor suppressor genes are normal genes that slow down cell division, repair DNA mistakes, and tell cells when to die (a process known as apoptosis or programmed cell death). When tumor suppressor genes don't work properly, cells can grow out of control, which can lead to cancer.
|
|
|
|
Online Genetics Resources for Consumers
|
|
American Society of Human Genetics
|
|
www.ashg.org/education/consumers.shtml
|
|
|
|
Ovarian Cancer
|
|
Lab Tests Online
|
|
2005
|
|
www.labtestsonline.org/understanding/conditions/ovarian.html
|
|
Tests used in the diagnosis of ovarian cancer, including the genetic mutation that causes a susceptibility to cancer.
|
|
|
|
Pancreatic Cancer
|
|
Genes and Disease, National Center for Biotechnology Information
|
|
no date
|
|
www.ncbi.nlm.nih.gov/books/bv.fcgi?call=bv.View..ShowSection&rid=gnd.section.108
|
|
A high percentage of human pancreatic carcinomas involve chromosome 18.
|
|
|
|
Parentage Testing
|
|
Lab Tests Online
|
|
2005
|
|
www.labtestsonline.org/understanding/features/genetics-6.html
|
|
|
|
Paternity Testing
|
|
Sumanas, Inc.
|
|
2003
|
|
www.sumanasinc.com/webcontent/anisamples/dynamicillustrations/paternitytesting.html
|
|
Illustrated animated tutorial on how paternity testing is done.
|
|
|
|
Pharmacogenomics
|
|
Human Genome Project
|
|
2008
|
|
www.ornl.gov/sci/techresources/Human_Genome/medicine/pharma.shtml
|
|
Definition, benefits, use, barriers to Pharmacogenomics.
|
|
|
|
PKU
|
|
Dolan DNA Learning Center, Cold Spring Harbor Laboratory
|
|
2002
|
|
www.ygyh.org/pku/whatisit.htm
|
|
Definition, cause, symptoms, treatment, incidence, testing, screening and much more.
|
|
|
|
Policy and Ethics
|
|
National Human Genome Research Institute
|
|
2008
|
|
www.genome.gov/PolicyEthics/
|
|
Privacy and discrimination, legal, health, social, cultural, religious, biomedical research issues
|
|
|
|
Polycystic Kidney Disease
|
|
Dolan DNA Learning Center, Cold Spring Harbor Laboratory
|
|
2002
|
|
www.ygyh.org/pkd/whatisit.htm
|
|
Definition, cause, symptoms, treatment, incidence, testing, screening and much more.
|
|
|
|
President's Council on Bioethics
|
|
President's Council on Bioethics
|
|
bioethics.gov/
|
|
The Commission advises the President on bioethical issues that may emerge as a consequence of advances in biomedical science and technology.
|
|
|
|
PSEN1 Test
|
|
Lab Tests Online
|
|
2006
|
|
www.labtestsonline.org/understanding/analytes/psen1/test.html
|
|
Screens for a rare mutation known to be associated with Early Onset Familial Alzheimer's Disease. Links to the test "at a glance." To access more information click on the tabs Test Sample, The Test, Common questions.
|
|
|
|
Pulmonary Arterial Hypertension
|
|
Genetics Home Reference
|
|
2007
|
|
ghr.nlm.nih.gov/condition=primarypulmonaryhypertension
|
|
Primary pulmonary hypertension is a progressive disorder characterized by abnormally high blood pressure (hypertension) in the arteries of the lungs (pulmonary arteries).
|
|
|
|
Reproduction and Responsibility, Chapter 4: Modification of Traits and Characteristics
|
|
President's Council on Bioethics
|
|
2004
|
|
www.bioethics.gov/reports/reproductionandresponsibility/chapter4.html
|
|
The chapter reviews the relevant techniques and practices, addresses ethical considerations, considers the existing regulatory activities.
|
|
|
|
Reproduction and Responsibility, Chapter 4: Research Involving In Vitro Human Embryos
|
|
President's Council on Bioethics
|
|
2004
|
|
www.bioethics.gov/reports/reproductionandresponsibility/chapter5.html
|
|
The chapter reviews the relevant techniques and practices, addresses ethical considerations, considers the existing regulatory activities.
|
|
|
|
Reproduction and Responsibility, Chapter 6: Commerce
|
|
President's Council on Bioethics
|
|
2004
|
|
www.bioethics.gov/reports/reproductionandresponsibility/chapter6.html
|
|
Chapter discusses commerce involving gametes and embryos, ART services, and the patenting of human organisms.
|
|
|
|
Reproduction and Responsibility: The Regulation of New Biotechnologies
|
|
President's Council on Bioethics
|
|
2004
|
|
www.bioethics.gov/reports/reproductionandresponsibility/index.html
|
|
Regulation of biotechnology at the intersection of assisted reproduction, human genetics, and embryo research.
|
|
|
|
Reproductive Cloning
|
|
Center for Genetics and Society
|
|
2009
|
|
www.ama-assn.org/ama/pub/physician-resources/medical-science/genetics-molecular-medicine/related-policy-topics/stem-cell-research/human-cloning.shtml
|
|
The basic science behind cloning, arguments for and against, and frequently asked questions.
|
|
|
|
Retinoblastoma
|
|
Genes and Disease, National Center for Biotechnology Information
|
|
No date
|
|
www.ncbi.nlm.nih.gov/books/bv.fcgi?call=bv.View..ShowSection&rid=gnd.section.112
|
|
|
|
Risk Factors (Heart Disease and Stroke)
|
|
National Heart Lung and Blood Institute
|
|
www.nhlbi.nih.gov/hbp/hbp/hdrf.htm
|
|
|
|
Science Primer: Systematics and Molecular Phylogenetics
|
|
National Center for Biotechnology Information
|
|
2004
|
|
www.ncbi.nlm.nih.gov/About/primer/phylo.html
|
|
Phylogenetics deals with identifying and understanding the evolutionary relationships among species.
|
|
|
|
Should You Be Tested for Breast Cancer Genes? Genetic Counselor Answers Common Questions
|
|
American Cancer Society
|
|
2004
|
|
www.cancer.org/docroot/NWS/content/NWS_2_1x_Should_You_Be_Tested_for_Breast_Cancer_Genes.asp
|
|
|
|
Sickle Cell Anemia
|
|
Lab Tests Online
|
|
2006
|
|
www.labtestsonline.org/understanding/conditions/sickle.html
|
|
|
|
Sickle Cell Disease
|
|
Dolan DNA Learning Center, Cold Spring Harbor Laboratory
|
|
2002
|
|
www.ygyh.org/sickle/whatisit.htm
|
|
Definition, cause, symptoms, treatment, incidence, testing, screening and much more.
|
|
|
|
Sickle Cell Test
|
|
Lab Tests Online
|
|
2006
|
|
www.labtestsonline.org/understanding/analytes/sickle/glance.html
|
|
|
|
Small Cell Lung Carcinoma
|
|
Genes and Disease, National Center for Biotechnology Information
|
|
no date
|
|
www.ncbi.nlm.nih.gov/books/bv.fcgi?call=bv.View..ShowSection&rid=gnd.section.103
|
|
Deletion of part of chromosome 3.
|
|
|
|
SNP Fact Sheet
|
|
Human Genome Project
|
|
2008
|
|
www.ornl.gov/sci/techresources/Human_Genome/faq/snps.shtml
|
|
What are SNPs?
|
|
|
|
Systemic Lupus Erythematosus
|
|
Lab Tests Online
|
|
2004
|
|
www.labtestsonline.org/understanding/conditions/lupus.html
|
|
Laboratory tests for lupus.
|
|
|
|
Talking Glossary of Genetic Terms
|
|
National Human Genome Research Institute
|
|
www.genome.gov/10002096
|
|
The National Human Genome Research Institute (NHGRI) created the Talking Glossary of Genetic Terms to help people without scientific backgrounds understand the terms and concepts used in genetic research. Simply click on the term of interest to open a page with a wealth of information, including the term's pronunciation, audio information, images and additional links to related terms. Students, teachers and parents will find the glossary an easy-to-use, always available learning source on genetics.
|
|
|
|
Tau/AB42 Tests
|
|
Lab Tests Online
|
|
2004
|
|
www.labtestsonline.org/understanding/analytes/tau/test.html
|
|
Tests for Tau protein and Aß42 may be used as supplemental tests to help establish a diagnosis of Alzheimer's Disease.
|
|
|
|
Tay-Sachs Disease
|
|
Dolan DNA Learning Center, Cold Spring Harbor Laboratory
|
|
2002
|
|
www.ygyh.org/tay/whatisit.htm
|
|
Definition, cause, symptoms, treatment, incidence, testing, screening and much more.
|
|
|
|
Thalassemia
|
|
LabTests Online
|
|
2007
|
|
www.labtestsonline.org/understanding/conditions/thalassemia.html
|
|
Thalassemia is a group of inherited disorders that affect the amount and type of hemoglobin a person produces. It is a type of anemia.
|
|
|
|
Thalassemia Care Centers
|
|
National Center on Birth Defects and Developmental Disabilities, Hereditary Blood Disorders
|
|
2005
|
|
www.cdc.gov/ncbddd/hbd/thal_center_list.htm
|
|
Centers for Disease Control (CDC) supports a network of specialized health-care centers to prevent and reduce complications experienced by persons with certain hereditary blood disorders. Thalassemia is a group of genetic blood disorders that affect approximately 1,000 individuals in the United States. The most severe of these disorders is Cooley's Anemia.
|
|
|
|
Tissue Typing for Transplantation
|
|
Lab Tests Online
|
|
2005
|
|
www.labtestsonline.org/understanding/features/genetics-7.html
|
|
|
|
Understanding Cancer Series: Gene Testing
|
|
National Cancer Institute
|
|
2006
|
|
www.cancer.gov/cancertopics/understandingcancer/genetesting
|
|
40 "slide" presentation on the basics of gene testing. Slides 1-8 cover basic information on genes, slides 9-18 mutation, inheritance, slides 19-40 gene testing, benefits, limitations, decision making, confidentiality, psychological concerns, genetic counselor.
|
|
|
|
Universe of Genetic Testing
|
|
Lab Tests Online
|
|
2005
|
|
www.labtestsonline.org/understanding/features/genetics.html
|
|
|
|
Universe of Genetic Testing: The Future
|
|
Lab Tests Online
|
|
2005
|
|
www.labtestsonline.org/understanding/features/genetics-11.html
|
|
|
|
Usher Syndrome
|
|
National Eye Institute
|
|
www.ushersyndrome.nih.gov/
|
|
Researchers have described three types of Usher syndrome-type I, type II and type III.
|
|
|
|
What Causes Pancreatic Cancer?
|
|
Johns Hopkins Pathology
|
|
pathology.jhu.edu/pancreas/BasicCauses.php?area=ba
|
|
|
|
Your Genes Your Health
|
|
Dolan DNA Learning Center
|
|
yourgenesyourhealth.org/
|
|
Information on several genetic disorders.
|
|
|
|
| |
|