Genetic Resources
Health care providers who deliver genetic services, including genetic counseling can be located through local, regional, and national professional genetics organizations; through the NCI Web site Cancer Genetics Services Directory 1; and through the Gene Tests-Gene Clinics 2Web site. Providers of cancer genetic services are not limited to one specialty and include medical geneticists, genetic counselors, advanced practice genetics nurses, oncologists (medical, radiation, or surgical), other surgeons, internists, family practitioners, and mental health professionals. A cancer genetics health care provider will assist in constructing and evaluating a pedigree, eliciting and evaluating personal and family medical histories, and calculating and providing information about cancer risk and/or probability of a mutation being associated with cancer in the family. In addition, if a genetic test is available, these providers can assist in pretest counseling, laboratory selection, informed consent, test interpretation, posttest counseling, and follow-up. Please see the Table of Links at the end of this summary in printable view for the Genetic Resources URLs.
Consumer/Client: General Information
Resource
|
Description
|
The DNA Files 8
|
Series of 14 1-hour public radio documentaries and related information. |
Dolan DNA Learning Center Gene Almanac 9
|
Variety of educational resources, including an interactive DNA timeline. |
FORCE: Facing Our Risk of Cancer Empowered 10
|
Provides support and information to individuals and families affected by hereditary breast and ovarian cancer through a toll-free help line, message boards, chat, and support groups. |
Genetics Education Center 11
|
Material for educators. |
Genetics Home Reference—National Library of Medicine 12
|
Consumer information about genetic conditions and the genes or chromosomes responsible for those conditions. |
Genetic and Rare Diseases Information Center 13
|
Information service for the general public, including patients and their families as well as health care professionals and biomedical researchers. |
Genetic Science Learning Center 14
|
Basic genetics, genetic disorders, genetics in society, and several thematic units. |
The Human Genome Project: Exploring Our Molecular Selves 15
|
Downloadable modules or online viewing of The Human Genome Project, including milestones, a talking glossary, classroom activities, and a 3-D computer-animated video on basic molecular biology. |
National Cancer Institute: Cancer Genetics Services Directory 1
|
Directory lists professionals who provide cancer genetics services (cancer risk assessment, genetic counseling, genetic susceptibility testing, and others). |
National Cancer Institute: Dictionary of Genetics Terms 16
|
Contains definitions for more than 100 terms related to genetics. |
The New Genetics: A Resource for Students and Teachers 17
|
Links to genetics education resources. |
Understanding Cancer Series: Gene Testing (from the National Cancer Institute) 18
|
Primer on genetic testing. |
Ethical, Legal and Social Implications (ELSI), Policy, and Legislation
Resource
|
Description
|
bioethics.net 20
|
Links to articles on genetics and bioethics. |
Bioethics Resources on the Web 21
|
Links to bioethics resources. |
Coalition for Genetic Fairness 22
|
Describes GINA’s protections including a history of the legislation, key examples, and definitions. |
DNA Patent Database 23
|
Searchable database of U.S. DNA-based patents and patent applications issued by the U.S. Patent and Patent Applications Trademark Office. |
Ethical, Legal, and Social Issues (from the Human Genome Project) 24
|
Information, articles, and links on a wide range of issues. |
Genethics.ca 25
|
Information on the social, ethical, and policy issues associated with genetic and genomic knowledge and technology. |
Genetics and Public Policy Center 26
|
Information on public policy related to human genetic technologies for the public, media, and policy makers. |
Genome Technology and Reproduction: Values and Public Policy and Communities of Color and Genetics Policy Project 27
|
Two subprojects combined to form a 5-year project designed to provide policy recommendations based on public perceptions and responses to the explosion of genetic information and technology. |
HumGen International 28
|
Comprehensive international database on the legal, social, and ethical aspects of human genetics. |
NCSL (National Conference of State Legislatures) Genetic Technologies Project 29
|
Resources on a variety of genetics public policy and related issues for state legislators, legislative staff, and other policy makers. |
National Information Resource on Ethics and Human Genetics 30
|
Links to resources and databases on ethics and human genetics. |
National Information Resource on Ethics and Human Genetics: Annotated Bibliographies: Scope Note Series 31
|
Annotated bibliographies on various genetics and ethics issues. |
National Human Genome Research Institute (NHGRI) Policy and Legislation Database 32
|
Searchable database of Federal and State laws/ statutes, Federal legislative materials, and Federal administrative and executive materials about privacy of genetic information/ confidentiality; informed consent; insurance and employment discrimination; genetic testing and counseling; and commercialization and patenting. |
National Society of Genetic Counselors (NSGC) Code of Ethics 33
|
A statement to clarify and guide the ethical conduct of genetic counselors. |
The President's Council on Bioethics 34
|
Reports, transcripts, and background material on current bioethical issues. |
THOMAS Legislative Information (from Library of Congress) 35
|
Searchable database of U.S. legislation (current and previous Congresses). |
Your Genes, Your Choices 36
|
Description of the Human Genome Project, the science behind it, and the ethical, legal, and social issues raised by the project. |
Genome Research
Resource
|
Description
|
BLAST Search (part of the Ensembl Project; see below) 43
|
Search protein or DNA sequence against metazoan genomes. |
The Cancer Genome Anatomy Project (CGAP) 44
|
Access to all CGAP data and biological resources. |
CancerGenes 45
|
Combines gene lists annotated by experts with information from key public databases such as Entrez Gene, COSMIC, and iHOP. |
Cancer Genome Workbench (CGWB) 46
|
Integrates clinical tumor mutation profiles with the reference human genome to improve the accuracy of mutation identification. |
Chromosomal Variation in Man 47
|
Searchable database of literature citations on chromosomal variants and anomalies. |
Ensembl (Joint software project between the European Bioinformatics Institute and the Wellcome Trust Sanger Institute) 48
|
Data sets resulting from an automated genome analysis and annotation process. |
Genome Channel 49
|
Java viewers for human genome data. |
Genome Sequencing Center: Homo sapiens Maps 50
|
Links to clone and accession maps of the human genome. |
KMcancerDB 51
|
Human gene mutation database with graphical display of molecular information for cancer-related genes. |
National Center for Biotechnology Information: Genomic Biology 52
|
Views of chromosomes, maps, and loci; links to other NCBI resources. |
Online Mendelian Inheritance in Man (OMIM)
|
Catalog of human genes and genetic disorders. |
International HapMap Project 53
|
A variety of ways to query for SNPs in the human genome. |
UCSC Genome Bioinformatics 54
|
Reference sequence for the human and C. elegans genomes and working drafts for the mouse, rat, Fugu, Drosophila, C. briggsae, yeast, and SARS genomes. |
Institutional Review Boards (IRBs)
Resource
|
Description
|
Genetic Testing and Screening in the Age of Genomic Medicine.
New York State Task Force on Life and the Law. 71
|
Includes general and state-specific information in a bulleted report. |
Pharmacogenetics: Ethical Issues.
Nuffield Council on Bioethics. 72
|
Includes a section discussing the use of pharmacogenetics in clinical trials. |
Protecting Human Research Subjects Institutional Review Board Guidebook, Chapter V, Section H: Human Genetic Research.
Office for Human Research Protections. 73
|
Discusses many issues that continue to challenge IRBs investigators, and policy makers today. |
Professional Organizations: Genetics
Resource
|
Description
|
American Board of Genetic Counseling (ABGC) 75
|
Information about certification of genetic counselors. |
American Board of Medical Genetics (ABMG) 76
|
Information about medical genetic training programs and certification of geneticists. |
American College of Medical Genetics (ACMG) 77
|
Resources, policy statements, and practice guidelines about medical genetics. |
American Society for Human Genetics (ASHG) 78
|
Resources, projects, and policies concerning human genetics. |
Genetics Nursing Credentialing Commission (GNCC) 79
|
Information about credentialing of genetics nurses. |
Genetics Society of America (GSA) 80
|
Links to teaching Web sites, general educational courses, and journals and publications about genetics. |
International Society of Nurses in Genetics (ISONG) 81
|
Resources to help nurses incorporate new knowledge about human genetics into practice, education, and research. |
National Society of Genetic Counselors (NSGC) 82
|
Information about genetic counseling: practice guidelines, links to genetic counselors, and genetic discrimination resources. |
|
1 | http://www.cancer.gov/search/geneticsservices |
2 | http://www.geneclinics.org |
3 | http://www.cancer.gov/cancertopics/pdq/genetics/overview/healthprofessional/Tab le1 |
4 | http://www.genetests.org |
5 | http://www.cdc.gov/genomics/hugenet/default.htm |
6 | http://www.infogenetics.org |
7 | http://www.cancer.gov/cancertopics/pdq/genetics/overview/healthprofessional/Tab le2 |
8 | http://www.dnafiles.org |
9 | http://www.dnalc.org/home.html |
10 | http://www.facingourrisk.org |
11 | http://www.kumc.edu/gec |
12 | http://ghr.nlm.nih.gov |
13 | http://www.genome.gov/10000409 |
14 | http://learn.genetics.utah.edu |
15 | http://www.genome.gov/Pages/EducationKit |
16 | http://www.cancer.gov/cancertopics/genetics-terms-alphalist |
17 | http://www4.umdnj.edu/camlbweb/teachgen.html |
18 | http://www.cancer.gov/cancertopics/UnderstandingCancer/genetesting |
19 | http://www.cancer.gov/cancertopics/pdq/genetics/overview/healthprofessional/Tab le3 |
20 | http://www.bioethics.net/articles.php?viewCat=6 |
21 | http://bioethics.od.nih.gov |
22 | http://www.geneticfairness.org/ginaresource.html |
23 | http://dnapatents.georgetown.edu |
24 | http://www.ornl.gov/hgmis/elsi/elsi.html |
25 | http://www.genethics.ca |
26 | Http://www.dnapolicy.org |
27 | http://www.sph.umich.edu/genpolicy |
28 | http://www.humgen.umontreal.ca/int |
29 | http://www.ncsl.org/programs/health/genetics.htm |
30 | http://www11.georgetown.edu/research/nrcbl/nirehg |
31 | http://www11.georgetown.edu/research/nrcbl/nirehg/quickbibsgen.htm |
32 | http://www.genome.gov/PolicyEthics/LegDatabase/pubsearch.cfm |
33 | http://www.nsgc.org/about/codeEthics.cfm |
34 | http://www.bioethics.gov |
35 | http://thomas.loc.gov |
36 | http://ehrweb.aaas.org/ehr/books/index.html |
37 | http://www.cancer.gov/cancertopics/pdq/genetics/overview/healthprofessional/Tab le4 |
38 | http://www.ama-assn.org/ama/pub/category/2380.html |
39 | http://www.cdc.gov/genomics/public/famhist.htm |
40 | http://www.nsgc.org/consumer/familytree/index.cfm |
41 | http://www.hhs.gov/familyhistory |
42 | http://www.cancer.gov/cancertopics/pdq/genetics/overview/healthprofessional/Tab le5 |
43 | http://www.ensembl.org/Homo_sapiens/blastview |
44 | http://cgap.nci.nih.gov |
45 | http://cbio.mskcc.org/cancergenes |
46 | http://cgwb.nci.nih.gov/cgi-bin/hgGateway?org=Human&db=hg18& |
47 | http://www.wiley.com/legacy/products/subject/life/borgaonkar |
48 | http://www.ensembl.org |
49 | http://compbio.ornl.gov/channel |
50 | http://genome.wustl.edu/genome.cgi?GENOME=Homo%20sapiens |
51 | http://mutview.dmb.med.keio.ac.jp/MutationView/jsp/index.jsp |
52 | http://www.ncbi.nlm.nih.gov/Genomes |
53 | http://snp.cshl.org |
54 | http://genome.cse.ucsc.edu |
55 | http://www.cancer.gov/cancertopics/pdq/genetics/overview/healthprofessional/Tab le6 |
56 | http://www.bwhct.nhs.uk/genetics-cemg-home.htm |
57 | http://www.genetics.com.au |
58 | http://www.genome.gov/Pages/Careers/HealthProfessionalEducation/geneticscompete ncy.pdf |
59 | http://www.egappreviews.org |
60 | http://www.medicine.manchester.ac.uk/gened |
61 | http://iml.dartmouth.edu/education/cme/Genetics |
62 | http://www.cincinnatichildrens.org/ed/clinical/gpnf/default.htm |
63 | http://genes-r-us.uthscsa.edu/resources/genetics/primary_care.htm |
64 | http://www.apa.org/science/genetics/homepage.html |
65 | http://www.marchofdimes.com/gyponline/index.bm2 |
66 | http://www.meddean.luc.edu/lumen/MedEd/genetics/core_curric.htm |
67 | http://www.nchpeg.org |
68 | http://www.nchpeg.org/core/Core_Comps_English_2007.pdf |
69 | http://www.cdc.gov/genomics/training/sixwks.htm |
70 | http://www.cancer.gov/cancertopics/pdq/genetics/overview/healthprofessional/Tab le7 |
71 | http://www.health.state.ny.us/nysdoh/taskfce/screening.htm |
72 | http://www.nuffieldbioethics.org/go/ourwork/pharmacogenetics/publication_314.ht ml |
73 | http://www.hhs.gov/ohrp/irb/irb_chapter5ii.htm#h12 |
74 | http://www.cancer.gov/cancertopics/pdq/genetics/overview/healthprofessional/Tab le8 |
75 | http://www.abgc.net/English/view.asp?x=1 |
76 | http://genetics.faseb.org/genetics/abmg/abmgmenu.htm |
77 | http://www.acmg.net |
78 | http://www.ashg.org/genetics/ashg/ashgmenu.htm |
79 | http://www.geneticnurse.org |
80 | http://www.genetics-gsa.org |
81 | http://www.isong.org |
82 | http://www.nsgc.org |
83 | http://www.cancer.gov/cancertopics/pdq/genetics/overview/healthprofessional/Tab le9 |
84 | http://www.yourdiseaserisk.harvard.edu |
85 | http://jamesline.com/patientsandvisitors/prevention/cancergenetics |
86 | http://enh.org/clinicalservices/medicalgenetics/mygenerations |
87 | http://www.cancer.gov/bcrisktool/Default.aspx |
88 | http://www.cancer.gov/colorectalcancerrisk/colorectal-cancer-risk.aspx |
89 | http://www.cancer.gov/melanomarisktool |
90 | http://www.cancer.gov/cancertopics/pdq/genetics/overview/healthprofessional/Tab le10 |
91 | http://hugenavigator.net/HuGENavigator/checkerComplexStartPage.do |
92 | http://www1.hgu.mrc.ac.uk/Softdata/MMRpredict.php |
93 | https://www.afcri.upenn.edu:8022/itacc/penn2/index.asp |
94 | http://www.dana-farber.org/pat/cancer/gastrointestinal/crc-calculator |
95 | http://www.cancer.gov/cancertopics/pdq/genetics/overview/healthprofessional/Tab le11 |
96 | http://www.geneticsresources.org |
97 | http://bioethics.georgetown.edu |
98 | http://hugenavigator.net |
99 | http://www.cancer.gov/cancertopics/pdq/genetics/overview/healthprofessional/Tab le12 |
100 | http://www.cdc.gov/genomics/default.htm |
101 | http://genomics.energy.gov |
102 | http://ask.hrsa.gov/ProfessionalPublications.cfm?start=72 |
103 | http://www.gemcris.od.nih.gov |
104 | http://www.cancer.gov/cancertopics/pdq/genetics |
105 | http://www.genome.gov |
106 | http://www.niehs.nih.gov/research/supported/programs/egp |