Understanding Gene Testing
www.gene.com/ae/AE/AEPC/NIH/index.html
Comprehensive, thoughtful answers to a wide range of questions about the
whethers and whys of genetic testing. Information is geared to the general
public. Sponsored by the National Cancer Institute and National Institutes
of Health.
Your Genes, Your Choices
www.nextwave.org/ehr/books/index.html
The full text of this recently published book is available online. The book
describes the Human Genome Project and the ethical, legal and social issues
it raises, using case studies and questions for further thought.
Illustrations help with understanding of the science behind the HGP.
Sponsored by the American Association for the Advancement of Science and
the U.S. Department of Energy.
Primer on Molecular Genetics from the U.S. Department of
Energy
www.ornl.gov/TechResources/Human_Genome/
publicat/primer/intro.html
Complete background information on genetics and the Human Genome Project,
from mapping and sequencing to collecting and storing data to the impact of
the genome project. The goal of this site is to help viewers understand the
Human Genome Project. Includes an extensive glossary of terms.
The Gene Letter
www.geneletter.org
This online newsletter about genetics and public policy features regular
columns on science, medicine, ethics, law and international developments.
The site also offers a Student Corner and resources section.
DNA Learning Center
darwin.cshl.org
Devoted entirely to public education on genetics. Offers field trips,
workshops, offsite links and other information on DNA science, genetic
medicine, biotechnology. Grade-level indicators are provided for educators.
Sponsored by Cold Spring Harbor Laboratory.
SB Healthcast
www.sb.com/sbhealthcast
This site features a weekly focus on healthcare and related issues,
including background information and a viewer survey. For the month of
September, topics are centered around genetics (information from past weeks
is archived with a searchable index). Sponsored by SmithKline Beecham.
The Family Village
familyvillage.wisc.edu
For individuals with disabilities and their families. Information about
conditions, support groups, specialized prducts, chat groups and more.
Includes a comprehensive, easy-to-navigate library, broken down by subject
areas. Covers genetic and non-genetic disabilities.
Genetics Glossary
helios.bto.ed.ac.uk/bto/glossary
A comprehensive, cross-linked glossary of genetics terms. Offered by the
University of Edinburgh (UK).
Human Genome Project, U.S. Department of Energy
www.er.doe.gov/production/oher/hug_top.html
Details the DOE's history with the Human Genome Project, with general
background information and progress updates.
Human Genome Project
www.nhgri.nih.gov
Contains background information about the Human Genome Project and many
links to other Web sites. Posted by the National Institutes of Health.
Human Genome Management Information Systems
www.ornl.gov/hgmis
Detailed information about the HGP directed to general audiences. Offers
FAQs, summaries of new findings, research area, publications. Sponsored by
Oak Ridge National Laboratory.
National Organization for Rare Disorders (NORD)
www.pcnet.com/~orphan
Offers a searchable database, lists of member organizations, local and
regional development programs and online newsletter.
Office of Rare Diseases, National Institutes of Health
rarediseases.info.nih.gov/ord
Information about rare diseases and ongoing research studies for consumers,
care givers, healthcare providers and biomedical researchers. Full
information broken down for Patients and the Public, Health Care
Providers and Research Investigators.
The Eunice Kennedy Shriver Center for Mental
Retardation
www.shriver.org
The Shriver Center was founded to answer questions about human development
and to help children and adults with developmental disabilities reach their
fullest potential. This site offers information about Shriver's research
divisions, plus community and family services and links to other
disability-related resources.
Wellness Web
wellweb.com/index.htm
This "patient's network" focuses on health/wellness and disease issues in
general. Provides information about clinical trials, community health, drug
dosages and compliance, treatment options and research, how to select a
health care provider, reports on dozens of illnesses and conditions, tips
about healthy lifestyles, complementary treatment alternatives and options,
and many more topics.
ResourceLink
members.aol.com/nsgcweb/rlhome.htm
Consumers can search by state/city for genetic counselors. Areas of
expertise are listed. Also indicates whether individual counselors are
willing to speak with students interested in the profession. Maintained by
the National Society of Genetic Counselors.
Genetic Syndrome Support Groups Online (and other
health-related Web sites)
http://members.aol.com/dnacutter/sgroup.htm
Comprehensive linked alphabetical index of online support groups.
National Society of Genetic Counselors
members.aol.com/nsgcweb/nsgchome.htm
Professional organization for genetic counselors. This page also features
basic information about Genetic Counseling as a career. Best feature: NSGC
ResourceLink, which allows viewers to search by state for genetic
professionals who will serve as a resource for students or patients seeking
further information.
Ask a Doctor
www.druginfonet.com/askmd.htm
Practicing, board-certified physicians and psychologists answer questions
submitted by viewers, whose identities remain anonymous. Frequently asked
questions are catalogued. A "dissenting opinion" area is available for
other physicians to comment.
Ask a Health Expert
www.columbia.edu/cu/healthwise/alice.html
A health question and answer service provid
ed by Columbia University.
American Medical Association
www.ama-assn.org
Offers a doctor-locator service, plus educational resources and news for
medical professionals, including job openings.
Great Lakes Regional Genetics Group (GLARGG)
www.waisman.wisc.edu/glargg
T
his regional support group for people dealing with genetic diseases and
other issues offers booklets for order and a comprehensive video lending
library. Statewide resource directories.
Mountain States Regional Genetic Services Network
www.ahsc.arizona.edu/~ms
rgsn/msrgsnhp.htm
The Web site for this regional genetic support network provides resources
for geneticists, health care practitioners, patients, families and their
caregivers. Features an online newsletter and resource directory.
SouthEastern Regional Genetics Group
www.cc.emory.edu/PEDIA
TRICS/sergg/sergg.htm
This regional genetic support group offers information about upcoming
meetings, an online newsletter and offsite links, plus a searchable
cytogenetic database of chromosomal abnormalities.
Ethical, Legal and Societal Implications of the Human Genome
Project
http://www.ornl.gov/TechResources/
Human_Genome/resource/elsi.html
Di
scussion of ethics and social issues in gene research. Contains articles,
research information, background, etc. Long list of links organized by area
of interest. Posted by Oak Ridge National Laboratories (Oak Ridge,
Tennessee).
Genetics and Public Issues Program, National Center for
Genome Resources
www.ncgr.org/gpi
Educational and informational resources for the public and medical
professionals designed to help direct informed decisions about genetic
information, technology and services and to support the need for policy
development that arises from genetic research.
Genetic Testing Task Force
www.med.jhu.edu/tfgtelsi
The Genetic Testing Task Force's recommendations on genetic testing.
University of Pennsylvania Center for Bioethics
www.med.upenn.edu/bioethics
O
ne of the pre-eminent centers for study of bioethics in the country.
Provides discussion groups and thorough background information on current
issues in bioethics, like cloning and physician-assisted suicide, plus a
bioethics book corner and virtual library.
Medical Decision Making
www.uic.edu/orgs/mdm
Online reprints of articles from the official journal for the Society for
Medical Decision Making.
Science Policy Forum
www.edoc.com/aaas/policy
Viewers can read policy statements about issues in genetic research and
participate in moderated discussion on these topics.
The Courts and Science Online Magazine
www.ornl.gov/courts
Provides articles and guidelines for science in the courtroom. Posted by
the Einstein Institute for Science, Health and the Courts.
The Biotechnology Law Web server
biotechlaw.ari.net
Information for biotech researchers on science and law updates.
Newshour with Jim Lehrer (discussion of cloning adult
mammals)
www.pbs.org/newshour/forum/
march97/cloning_3-7.html
Features the transcript of a "Newshour" discussion about genetic cloning,
sparked by the cloning of Dolly, the sheep.
Amazon.com
www.amazon.com
This online bookseller allows viewers to search by keyword to learn what
books are available on a specific disease or other area of interest.
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