ABCs of DNA: Unraveling the Mystery of Genetics Information for Consumers
Web Resources for Genetics Information
General Information:
ClinicalTrials.gov:
http://www.clinicaltrials.gov
Search example: "gene therapy"
- The site provides information about federally and privately funded clinical research with human volunteers. A search using a keyword, such as “genetic,” will search all fields and can be combined with diseases or conditions, location, treatment, sponsor, and more.
MedlinePlus:
http://www.medlineplus.gov
- MedlinePlus has Health Topic pages on genetic disorders, genetic testing, genetic counseling and many other related topic resources.
NORD (National Organization for Rare Disorders):
http://www.rarediseases.org/
- This organization is a non-profit health agency that exists to serve rare disease patients and their families. Some information is given free of charge, and full reports are available for $7.50 to offset costs of database and web site management.
Genetics Home Reference:
http://ghr.nlm.nih.gov
- Genetics Home Reference is the National Library of Medicine’s web site for consumer information about genetic conditions and the genes or chromosomes responsible for those conditions. It contains gene, chromosome and condition summaries, an illustrated handbook explaining the basics of how genes work and how mutations cause genetic disorders, and a glossary.
Genetics FAQ: National Human Genome Research Institute:
http://www.genome.gov/10001191
- NHGR is one of the 27 institutes and centers that make up the National Institutes of Health. This link provides answers and links to many frequently asked questions about genetics and health, including what genetic disorders are and how one decides whether to see geneticist or other specialist.
Talking Glossary of Genetic Terms: NHGRI
http://www.genome.gov/10002096
- Also from the National Human Genome Research Institute, this site provides help to those without scientific backgrounds to understand terms and concepts used in genetic research. Each term includes the pronunciation, audio information, images, and links to related terms.
Human Genome Resources: NCBI (National Center for Biotechnology Information):
http://www.ncbi.nlm.nih.gov/About/human/index.html
- This site is intended to serve as the genomic information infrastructure for researchers, so it is recommended only for the most sophisticated consumer wishing to learn more about gene sequencing and the science behind the research.
CHID (Combined Health Information Database):
http://chid.nih.gov/
- **Discontinued in its present form as of September 1, 2006. A bibliographic database produced by agencies of the National Institutes of Health that provides information about publications and health education resources often not indexed elsewhere. It provides access to government health publications and contact information for national and international rare disease patient support organizations.
Gene testing, genetic research, and biotechnology: MeL, Michigan eLibrary resources:
http://web.mel.org/viewtopic.jsp?id=249&pathid=1076
- The eLibrary Internet collection is developed by librarians and provides some very interesting links to topics in the field, including Science magazine’s special issue devoted to the Human Genome.
DNA Interactive: Dolan DNA Learning Center, Cold Spring Harbor Laboratory:
http://www.dnai.org/index.htm
Genetic Resources: Duke University Medical Center Library:
http://www.mclibrary.duke.edu/subject/genetics
Genetics Resources on the Web (GROW):
http://www.geneticsresources.org
- This web site’s search engine is designed to search member sites for genetics information. These members are a virtual “who’s who” in the field of human genetics and content for commercial purposes is strongly discouraged.
Genetics in the Yahoo! Directory:
http://dir.yahoo.com/science/biology/genetics/
Medical Genetics Information Resources for Consumers: Dartmouth Biomedical Libraries:
http://www.dartmouth.edu/~biomed/resources.htmld/med_gen_cons.shtml
Online Mendelian Inheritance in Man (OMIM) database: (primarily intended for physicians and other professionals)
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=OMIM
Genetics: Librarians' Internet Index:
http://www.lii.org/search?query=Genetics;searchtype=subject;no_stem=1
Concepts:
DNA from the Beginning: An Animated Primer on the Basics of DNA, Genes and Heredity
http://www.dnaftb.org/dnaftb/
Genetic Alliance - Alphabet Soup (terms, organizaions, resources)
http://www.geneticalliance.org/ws_display.asp?filter=resources_alphabet_soup
NOVA Online: Cracking the Code of Life Video (2 hours, broken into chapters, requires either QuickTime or RealVideo plug-in):
http://www.pbs.org/wgbh/nova/genome/program.html
Family History:
Genetic Alliance - Family History Tools:
http://www.geneticalliance.org/ws_display.asp?filter=resources_family_history
Mayo Clinic - How to Compile Your Family History:
http://www.mayoclinic.com/health/medical-history/HQ01707
U.S. Surgeon General’s
Family History Initiative:
http://www.hhs.gov/familyhistory
Genetic Counseling/Consultation:
Genetics Home Reference - Genetic Consultation:
http://ghr.nlm.nih.gov/info=consultation
KidsHealth.org: Genetic
Counseling:
http://www.kidshealth.org/parent/system/medical/genetic_counseling.html
National Society of Genetic Counselors: Find a Counselor:
http://www.nsgc.org/resourcelink.cfm
GeneTests:
http://www.genetests.org/
- This publicly-funded site’s mission is to provide current, authoritative information on genetic testing and its use in diagnosis, management, and genetic counseling, that promotes the appropriate use of genetic services in patient care and personal decision-making. Expert-authored disease reviews, clinic and laboratory directories, and educational materials are provided.
Genetic Disorders:
Genetic Disorders and Birth Defects - Indiana University School of Medicine:
http://geneinfo.medlib.iupui.edu/
Genetics Home Reference Fact Sheet:
http://www.nlm.nih.gov/pubs/factsheets/ghr.html
Organizations and Associations:
National Society of Genetic Counselors: Consumer information:
http://www.nsgc.org/consumer/
Genetics Resources on the Web (GROW): a listing of organizations that have come
together to provide a forum for high-quality information about human
genetics:
http://www.nih.gov/sigs/bioethics/grow.html
National Human Genome Research Institute:
http://www.genome.gov
Social, Legal, Ethical:
Council for Responsible Genetics:
Genetic testing, discrimination and privacy:
http://www.gene-watch.org/programs/privacy.html
Human genetic manipulation and cloning:
http://www.gene-watch.org/programs/cloning.html
Genetic Bill of Rights:
http://www.gene-watch.org/programs/bill-of-rights.html
Other genetic issues:
http://www.gene-watch.org/programs/other.html
- This site, from the Council for Responsible Genetics, provides invaluable resources for those who believe they are victims of genetic discrimination. It estimates that as many as 500 cases of discrimination have resulted in the loss of health and life insurance based on an apparent or perceived genetic abnormality. The organization also provides background and materials on cloning, stem cells and gene modification. Opposition to human reproductive cloning is clearly noted.
National Human Genome Research Institute - Policy and Legislation Database:
http://www.genome.gov/PolicyEthics/LegDatabase/pubsearch.cfm
Your Genes, Your Choices: Exploring the Issues Raised by Genetic Research - an online book by Catherine Baker:
http://ehrweb.aaas.org/ehr/books/index.html
The Kennedy Institute of Ethics at Georgetown University:
http://kennedyinstitute.georgetown.edu/index.htm
- A bibliography of bioethics that provides the most comprehensive access to literature about ethical, legal, and public policy aspects of health care and biomedical research is on this site. The Kennedy Institute is home to a group of scholars who engage in research, teaching, and public service on issues that include protection of research subjects, reproductive and feminist bioethics, end of life care, health care justice, intellectual disability, cloning, gene therapy, eugenics, and other major bioethical issues.
