American
Academy of Family Physicians (AAFP)
The AAFP has endorsed a Recommended Curriculum Guidelines
for Family Practice Residents.
American
Academy of Pediatrics, Section on Genetics and Birth Defects
Established in 1990, this section meets for the purpose of discussing
ideas, developing programs and projects which will improve the
care of infants, children and adolescents with genetic disorders
or birth defects, and educating primary care pediatricians about
the role of genetics in their practices.
American
College of Medical Genetics (ACMG)
The ACMG is an organization whose membership includes biochemical,
clinical, cytogenetic, medical and molecular geneticists, genetic
counselors, and other health care professionals committed to the
practice of medical genetics.
American
Society of Human Genetics (ASHG)
The American Society of Human Genetics (ASHG), founded in 1948,
is the primary professional membership organization for human
geneticists in North America. The ASHG brings together investigators
in human genetics to share research findings, primarily
through the Society's annual meeting and its official monthly
publication, The American Journal of Human Genetics.
CDC
Office of Genomics and Disease Prevention
The site provides information related to human genome research
and how discoveries can be used to prevent disease. Access to
the collaborative HuGENet
(The Human Genetics Epidemiology Network).
Communities
of Color and Genetics Policy Project
The
Project's focus is to develop a process for engaging communities
of color of diverse socio-economic levels in dialogues relating
to genome research and its resulting technology. It's outcome
will be recommendations for laws, professional standards and institutional
policies regarding the use and application of genome research
and technology.
Council
for Responsible Genetics (CRG)
The CRG, founded in 1983, is a national nonprofit
organization of scientists, environmentalists, public health advocates,
physicians, lawyers and other concerned citizens. CRG encourages
informed public debate about the social, ethical, and environmental
implications of new genetic technologies, and advocates for socially
responsible use of these technologies. Publishers of the
magazine, GeneWatch.
Department
of Energy (DOE) Human Genome Project
The Human Genome Project, initiated by the DOE in 1986 to map
and determine the complete DNA sequence of the human genome.
Includes a vast amount of information, including the Primer
on Molecular Genetics, the Gene
Gateway, a Genome
Glossary, and much more.
Foundation
for Genetic Medicine, Inc.
The Foundation was established to examine critical issues and
help develop and gain acceptance for public policies which support
and advance the ethical development of genetic medicine for improved
human health care. It is also concerned with helping our
society achieve "genomic literacy" through education.
GeneCards
Gene Cards is a database of concise information on gene structure,
function and involvement in disease processes.
GeneTests-Gene
Clinics
Publicly funded genetic information site. Includes the publication
Gene Reviews (previously Gene Clinics), worldwide
testing laboratory and clinic directories, and a teaching tool,
"The
Primary Care Physician: The Primary Source of Genetic Testing
Information", and more.
Genes
and Disease
Genes and Disease is
an online text containing information about genetic diseases associated
with specific chromosomes, a brief description of these disease,
links to one or two relevant PubMed citations, and link outs to
national associations. Also available fully searchable on the
PubMed
Bookshelf.
The
Genetics Resource Center
Presents an exhaustive listing of genetic resources
categorized by information type, such as books, journals and articles,
information for students, among others.
The
Genome Action Coalition (TGAC)
Begun in 1995, TGAC is involved in various advocacy
issues including testifying before Congress, supporting legislation
important to genetics (such as genetic nondiscrimination in insurance
policies), along with conducting numerous briefings on Capitol
Hill and elsewhere.
The
Genome Database
The official central repository for genomic mapping data resulting
from the Human Genome Initiative, maintained at the Bioinformatics
Supercomputing Centre (BiSC) at The Hospital for Sick Children
in Toronto, Ontario, Canada. Includes information on regions of
the human genome, maps of the human genome and variations in the
human genome. Includes links and citations to outside resources.
GROW
(Genetic Resources on the Web) Search Tool
Provides the ability to search the National Institutes
of Health web pages for genetic information through inputting
terms of interest; e.g., breast cancer.
HuGENet
Human Genome Epidemiology Network
A global collaboration of individuals and organizations committed
to the development and dissemination of population-based epidemiologic
information on the human genome. The Web site offers access
to information on population-specific prevalence data on human
gene variants, epidemiologic data on the association between genetic
variation and diseases in different populations; quantitative
population-based data on gene-environment interaction; and population
impact on the use of genetic tests and services in improving health
and preventing disease.
HuGEM
(Human Genome Education Model) Project II
A collaborative effort, funded by the National Human Genome Research
Project, HuGEM II faculty will be providing educational workshops
that are case-centered, consumer-involved and competency based.
Joint
Genome Institute and Gene Sequencing Facility
Formed in 1997, the JGI is a virtual laboratory whose work will
be conducted in a number of labs allowing more efficient and effective
use of expertise and resources across labs. It takes advantage
of the complementing strengths and expertise in genome mapping,
sequencing, genome technology development and information sciences
developed at DOE genome centers at Lawrence Berkeley National
Laboratory (LBNL), Lawrence Livermore National laboratory (LLNL),
and Los Alamos National Laboratory (LANL) and those at other labs
and universities.
Kansas
University Medical Center, Information for Genetics Professionals
Provides information for genetic professionals (counselors,
clinical and medical geneticists) with regularly updated information
on clinical, research, and educational resources.
Mid-Atlantic
Regional Human Genetics Network
The Network is a partnership of consumers, health care providers
and other professionals, government agencies, and commercial enterprises
to provide opportunities to collaborate regionally in education,
research and other relevant genetic activities; to promote access
to genetic services; and develop, facilitate and support the collection
and utilization of genetics services data.
National
Cancer Institute
Information on genetics and cancer.
National
Center for Biotechnology Information (NCBI)
NCBI was established in 1988 as a national resource for molecular
biology information. Among its many important services,
the Center provides public databases and software tools for analyzing
genome data. NCBI also works with the NLM to produce PubMed.
National
Coalition for Health Professional Education in Genetics
NCHPEG is a national effort to promote health professional
education and access to information about advances in human genetics
from a diverse group of health professional individuals and organizations.
National
Human Genome Research Institute (NHGRI)
NHGRI was eatablished in 1989 to head the Human Genome Project
for the National Institutes of Health.
National
Society of Genetic Counselors, Inc. (NSGC)
The
Society's mission is to promote the genetic counseling profession
as a recognized and integral part of health care delivery, education,
research and public policy. Position statements are available
from their homepage.
The
National Taskforce for Newborn Screening and Genetic Resource
Center (NNSGRC)
The National Taskforce will replace the Council
of Regional Networks for Genetic Services to bring together network
representatives to encourage and facilitate communication and
planning for genetic services
New
York State Department of Health
NYS DOH has several genetic resources available including:
Office
of Rare Diseases (ORD)
ORD provides information on more than 6000 rare diseases,
including current research, publications from scientific and medical
journals, completed research, ongoing studies, and patient support
groups.
Online
Mendelian Inheritance in Man (OMIM)
OMIM is a database which catalogs human genes and genomic disorders.
The database contains textual information, pictures, and reference
information. It also provides links to NCBI's MEDLINE and
sequence databases.
OrphaNet
OrphaNet is a database providing access to information about rare
diseases and orphan drugs.
Promoting
Safe and Effective Genetic Testing in the United States
Final Report of the Task Force on Genetic Testing.
The Task Force was created by the National Institutes of Health-Department
of Energy Working Group on Ethical, Legal, and Social Implications
of Human Genome Research.
Public
Health Genetics Society
The goal of the Public Health Genetics Society
is to promote awareness of the role of genetics in public health
and disease and the implications of genetic technology on public
health. The Society hopes to fulfill this goal by publishing a
newsletter and sponsoring presentations, seminars and conferences
related to these issues.
Secretary's
Advisory Committee on Genetic Testing (SACGT)
The SACGT will advise the government about all aspects of the
development and use of genetic tests, including the complex medical,
ethical, legal, and social issues raised by genetic testing.
Sickle
Cell Information Center
The mission of this site is to provide sickle cell professional
and patient education, news, research updates and world wide sickle
cell resource.
