Private/Support Organizations

American Heart Association

• Impact of Laboratory Molecular Diagnosis on Contemporary Diagnostic Criteria for Genetically Transmitted Cardiovascular Diseases: Hypertrophic Cardiomyopathy, Long-QT Syndrome, and Marfan Syndrome
• Recommendations for Physical Activity and Recreational Sports Participation for Young Patients With Genetic Cardiovascular Diseases

Applied Research Ethics National Association (ARENA)

Association of Retarded Citizens (ARC): Reports of the ARC's Human Genome Education Project

• An introduction to Genetics and Mental Retardation
• Council for Responsible Genetics (CRG)
• Foundation on Economic Trends
• Fragile X Syndrome
• Genetic Discrimination Legislation
• Genetic Discrimination: Why Should We Care?
• Genetic Testing, Screening, and Counseling: An Overview
• Gene Therapy and Mental Retardation
• Mental Retardation and Development Disabilities Research Centers: An Overview of Current Genetic Research
• Participating in Genetic Research: Considerations for People with Mental Retardation and Their Families
• Position Statement on Genetic Discrimination
• Protecting Genetic Privacy

Council for Responsible Genetics (CRG)

• Genetic Discrimination Legislation
• Position Statement on Genetic Discrimination

General Board of Church and Society: The United Methodist Church

• The General Board of Church and Society works on various issues related to genetics.

Hereditary Disease Foundation

• Statement on Protection Against Genetic Discrimination

Huntington's Disease Society of America, Inc.

• Guidelines for Genetic Testing for Huntington's Disease

Little People of America

• Position Statement on Genetic Discoveries in Dwarfism

National Cancer Institute (NCI)

Cancer Genetics

Genes and the Environment
Information from the Nation's Investment in Cancer Research, NCI's annual planning document.

Division of Cancer Epidemiology and Genetics
DCEG scientists conduct an international program of population-based studies to identify environmental and genetic determinants of cancer.

Office of Cancer Genomics
The efforts of the Office of Cancer Genomics include managing the following research programs: the Cancer Genome Anatomy Project, the NIH Mammalian Gene Collection, and the Initiative for Chemical Genetics.

Cancer Genetics Working Group

Epidemiology and Genetics Research Program
Manages a comprehensive program of grant-supported, population-based research that brings to bear the expertise of scientists to increase our understanding of cancer etiology and prevention.

Human Genetics Program
This program was established to provide an expanded focus for interdisciplinary research into the genetic determinants of human cancer.

Mouse Cancer Genetics Program
Members of the Mouse Cancer Genetics Program make use of molecular mouse genetics as a primary tool to better understand the fundamental processes underlying mammalian development and/or human disease.

Cancer Genetics Network
A national network of centers specializing in the study of inherited predisposition to cancer.

The Family Factor in Cancer
A fact sheet on familial cancer.

The Concise Handbook of Family Cancer Syndromes

Etiologic Investigation of Cancer Susceptibility in Inherited Bone Marrow Failure Syndromes (IBMFS)

Elements of Cancer Genetics Risk Assessment and Counseling (PDQ®) (Health Professional) Expert-reviewed information summary in which cancer risk perception, risk communication, and risk counseling are discussed. The summary also contains information about recording and analyzing a family history of cancer and factors to consider when offering genetic testing.

Genetics of Medullary Thyroid Cancer (PDQ®) (Health Professional) Expert reviewed information summary about the genetics of medullary thyroid cancer and related disorders. This summary contains information about the RET gene, genetic testing, and clinical interventions. Psychosocial issues associated with genetic testing and counseling of individuals who may have a hereditary medullary thyroid cancer syndrome are also discussed.

Genetics of Colorectal Cancer (PDQ®) (Health Professional)Expert-reviewed information summary about the genetics of colorectal cancer, including information about specific genes and family cancer syndromes. The summary also contains information about screening for colorectal cancer and research aimed at prevention of this disease. Psychosocial issues associated with genetic testing and counseling of individuals who may have a hereditary colorectal cancer syndrome are also discussed.

Genetics of Breast and Ovarian Cancer (PDQ®) (Health Professional)Expert-reviewed information summary about the genetics of breast and ovarian cancer, including information about specific genes and family cancer syndromes. The summary also contains information about interventions that may influence the risk of developing breast or ovarian cancer in individuals who may be genetically susceptible to these diseases. Psychosocial issues associated with genetic testing are also discussed.

Cancer Genetics Overview (PDQ®) (Health Professional)Expert-reviewed information summary in which the validity and utility of genetic tests are discussed and important genetic terms are defined.

Genetics of Prostate Cancer (PDQ®) (Health Professional)Expert-reviewed information summary about the genetics of prostate cancer, including information about specific genes and family cancer syndromes. The summary also contains information about screening for prostate cancer and research aimed at prevention of this disease. Psychosocial issues associated with genetic testing and counseling of individuals who may have a hereditary prostate cancer syndrome are also discussed.

Genetic Testing For Cancer Risk

National Down Syndrome Congress

• Position Statement of the National Down Syndrome Congress on Prenatal Testing and Eugenics: Families' Rights and Needs

National Hemophilia Foundation

• MASAC Resolution on Creutzfeldt-Jakob Disease, new variant CJD, and Plasma-Derived Coagulation Products

National Neurofibromatosis Foundation (Clinical Care Advisory Board)

• The Diagnostic Evaluation and Multidisciplinary Management of Neurofibromatosis 1 and Neurofibromatosis 2

NIH Office of Research on Women’s Health (ORWH)

Public Responsibility in Medicine and Research (PRIM&R)