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 GeneTests 2 Web 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.
Table 1. Clinical Genetics Information Table 2. Clinical Management Information Table 3. Consumer/Client: General Information| Resource | Description |
| Cancer Genetics Services Directory (National Cancer Institute [NCI]) 1 | Directory lists professionals who provide cancer genetics services (cancer risk assessment, genetic counseling, genetic susceptibility testing, and others). |
| Dictionary of Genetics Terms (NCI) 12 | Definitions of more than 150 terms related to genetics. |
| The DNA Files 13 | Series of 14 1-hour public radio documentaries and related information. |
| Dolan DNA Learning Center 14 | Variety of educational resources, including an interactive DNA timeline. |
| Facing Our Risk of Cancer Empowered (FORCE) 15 | Support and information to individuals and families affected by hereditary breast and ovarian cancer through a toll-free help line, message boards, chat rooms, and support groups. |
| Genetic and Rare Diseases Information Center (National Human Genome Research Institute [NHGRI]): 16 | Information service for the general public, including patients and their families as well as health care professionals and biomedical researchers. |
| Genetic Science Learning Center (The University of Utah) 17 | Information about basic genetics, genetic disorders, genetics in society, and several thematic units. |
| Genetics Education Center 18 | Material for educators. |
| Genetics Home Reference (National Library of Medicine) 19 | Consumer information about genetic conditions and the genes or chromosomes responsible for those conditions. |
| Talking Glossary of Genetics Terms (NHGRI) 20 | Contains definitions of more than 200 terms related to genetics and a quiz to test your knowledge of genetic terminology. Many terms also have images, animations, and descriptions by specialists in the field of genetics. |
| Understanding Cancer Series (NCI) 21 | Primers on cancer genomics, genetic testing, genome-wide profiling, and other topics. |
| Understanding the Human Genome Project (NHGRI) 22 | An education kit that includes a dynamic timeline, a 3-D computer-animated video on basic molecular biology, and other classroom activities. |
Table 4. Ethical, Legal, and Social Implications (ELSI), Policy, and Legislation Information| Resource | Description |
| bioethics.net 24 | Links to articles on genetics and bioethics. |
| Bioethics Resources on the Web 25 | Links to bioethics resources. |
| DNA Patent Database 26 | 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 (U.S. Department of Energy) 27 | Information, articles, and links on a wide range of genetics issues. |
| Genethics.ca 28 | Information on the social, ethical, and policy issues associated with genetic and genomic knowledge and technology. |
| Genetic Information Nondiscrimination Act (GINA) of 2008 (National Human Genome Research Institute [NHGRI]) 29 | Fact sheet that describes genetic discrimination and GINA for the public. |
| GINA: An Overview (Coalition for Genetic Fairness) 30 | Describes GINA’s protections, including a history of the legislation, key examples, and definitions. |
| GINA of 2008 Information for Researchers and Health Care Professionals (NHGRI) 31 | Fact sheet that describes GINA for researchers and health professionals. |
| Genetics and Public Policy Center 32 | 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 33 | 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 34 | Comprehensive international database on the legal, social, and ethical aspects of human genetics. |
| National Conference of State Legislatures Genetic Technologies Project 35 | 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 (Georgetown University) 36 | Links to resources and databases on ethics and human genetics. Also includes annotated bibliographies 37 on various genetics and ethics issues. |
| National Society of Genetic Counselors Code of Ethics 38 | A statement to clarify and guide the ethical conduct of genetic counselors. |
| Policy and Legislation Database (NHGRI) 39 | 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. |
| THOMAS Legislative Information (The Library of Congress) 40 | Searchable database of U.S. legislation (current and previous Congresses). |
| Your Genes, Your Choices: Exploring the Issues Raised by Genetic Research 41 | Description of the Human Genome Project, the science behind it, and the ethical, legal, and social issues raised by the project. |
Table 5. Family History Tools Table 6. Genome Research Information| Resource | Description |
| BLAST = Basic Local Alignment Search Tool; SARS = Severe acute respiratory syndrome; SNPs = single nucleotide polymorphisms; UCSC = University of California, Santa Cruz |
| BLAST Search (part of the Ensembl Project; see below) 49 | Search protein or DNA sequence against metazoan genomes. |
| The Cancer Genome Anatomy Project (CGAP) 50 | Access to all CGAP data and biological resources. |
| CancerGenes 51 | Combines gene lists annotated by experts with information from key public databases such as Entrez Gene 52, COSMIC 53, and iHOP 54. |
| Cancer Genome Workbench (CGWB) 55 | Integrates clinical tumor mutation profiles with the reference human genome to improve the accuracy of mutation identification. |
| Chromosomal Variation in Man 56 | 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) 57 | Data sets resulting from an automated genome analysis and annotation process. |
| Genome Channel 58 | Java viewers for human genome data. |
| Genome Sequencing Center: Homo sapiens Maps 59 | Links to clone and accession maps of the human genome. |
| International HapMap Project 60 | A variety of ways to query for SNPs in the human genome. |
| Leiden Open Variation Database 61 | A flexible, free tool for gene-centered collection, curation, and display of DNA variation. |
| KMcancerDB 62 | Human gene mutation database with graphical display of molecular information for cancer-related genes. |
| National Center for Biotechnology Information: Genomic Biology 63 | Views of chromosomes, maps, and loci; links to other NCBI resources. |
| Online Mendelian Inheritance in Man (OMIM) 5 | Catalog of human genes and genetic disorders. |
| UCSC Genome Bioinformatics 64 | Reference sequence for the human and C. elegans genomes and working drafts for the mouse, rat, Fugu, Drosophila, C. briggsae, yeast, and SARS genomes. |
Table 7. Health Professional Practice and Genetic Education Information| Resource | Description |
| Centre for Education in Medical Genetics 66 | Develops, provides, and evaluates genetics education opportunities and resources. |
| Centre for Genetics Education 67 | Education and service resources for patients and professionals. |
| Dolan DNA Learning Center 14 | Interactive multimedia genetics education resources. |
| Essentials of Genetic and Genomic Nursing: Competencies, Curricula Guidelines, and Outcome Indicators, 2nd edition 68 | Establishes minimum basis to prepare the nursing workforce to deliver competent genetic and genomic-focused nursing care. |
| Evaluation of Genomic Applications in Practice and Prevention (EGAPP) 69 | Provides an evidence-based review of genetic tests and other genomic applications that are in transition from research to clinical and public health practice in the United States. |
| Genetics & Your Practice 70 | Online modules for health care professionals designed for exploration of a topic rather than a sequential presentation of material. Includes fact sheets and sample clinical forms. Free registration required for access |
| Genetics and Social Science: Expanding Translational Research 71 | A free, online education program designed to provide social and behavioral scientists with sufficient genetics background to support the integration of genetics concepts in their own research and allow for collaborative studies with geneticists. |
| Genetics Education Center 18 | Online center for educators interested in human genetics and the Human Genome Project. |
| Genetics Education Program for Nurses (GEPN) 72 | Sample genetics nursing course syllabi and other genetics educational opportunities and resources for nurses. |
| Genetics/Genomics Competency Center for Education (G2C2) 73 | A repository of genetics/genomics education resources for nursing and physician assistant educators. |
| Genetics in Clinical Practice: A Team Approach 74 | Interactive virtual genetics clinic with case scenarios and case discussions. Target audience is primary care professionals. |
| Genetics in Primary Care 75 | Training program curriculum materials. |
| Genomic Applications in Practice and Prevention Network (GAPPNet) 76 | A collaborative initiative that aims to bring together stakeholders in order to accelerate and streamline effective and responsible use of validated and useful genomic knowledge and applications, such as genetic tests, technologies, and family history, into clinical and public health practice. |
| Medical School Core Curriculum in Genetics 77 | Medical school course competencies, skills, knowledge, and behaviors that should be covered in a genetics curriculum developed by the Association of Professors of Human and Medical Genetics and the American Society of Human Genetics. |
| National Coalition for Health Professional Education in Genetics (NCHPEG) 78 | Core competencies in genetics 79 and reviews of education programs. Descriptions of available instructional resources, courses, and institutes. |
| Six Weeks to Genomic Awareness 80 | Webcast of six lessons in genomics for public health professionals. |
Table 8. 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. 82 | Includes general and state-specific information in a bulleted report. |
| Pharmacogenetics: Ethical Issues. Nuffield Council on Bioethics. 83 | 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. 84 | Discusses many issues that continue to challenge IRBs investigators, and policy makers today. |
Table 9. Professional Organizations: Genetics| Resource | Description |
| American Board of Genetic Counseling (ABGC) 86 | Information about certification of genetic counselors. |
| American Board of Medical Genetics (ABMG) 87 | Information about medical genetic training programs and certification of geneticists. |
| American College of Medical Genetics (ACMG) 88 | Resources, policy statements, and practice guidelines about medical genetics. |
| American Society for Human Genetics (ASHG) 89 | Resources, projects, and policies concerning human genetics. |
| Genetics Nursing Credentialing Commission (GNCC) 90 | Information about credentialing of genetics nurses. |
| Genetics Society of America (GSA) 91 | Links to teaching Web sites, general educational courses, and journals and publications about genetics. |
| International Society of Nurses in Genetics (ISONG) 92 | Resources to help nurses incorporate new knowledge about human genetics into practice, education, and research. |
| National Society of Genetic Counselors (NSGC) 93 | Information about genetic counseling: practice guidelines, links to genetic counselors, and genetic discrimination resources. |
Table 10. Risk Assessment Information Table 11. Online Gene Mutation Prediction Programs Table 12. Search Engines Specializing in Genetics and Genomics Table 13. United States Government Agencies
Table of Links |
| 1 | http://www.cancer.gov/cancertopics/genetics/directory |
| 2 | http://www.ncbi.nlm.nih.gov/sites/GeneTests |
| 3 | http://www.cancer.gov/cancertopics/pdq/genetics/overview/healthprofessional/Tab le1 |
| 4 | http://www.cdc.gov/genomics/hugenet/default.htm |
| 5 | http://www.ncbi.nlm.nih.gov/sites/entrez?db=omim |
| 6 | http://www.cancer.gov/cancertopics/pdq/genetics/overview/healthprofessional/Tab le2 |
| 7 | http://www.acmg.net/AM/Template.cfm?Section=Practice_Guidelines&Template=/C M/HTMLDisplay.cfm&ContentID=6430 |
| 8 | http://www.asco.org/ASCOv2/Practice+%26+Guidelines/Guidelines/Clinical+Practice +Guidelines |
| 9 | http://www.nccn.org/clinical.asp |
| 10 | http://www.guidelines.gov |
| 11 | http://www.cancer.gov/cancertopics/pdq/genetics/overview/healthprofessional/Tab le3 |
| 12 | http://www.cancer.gov/cancertopics/genetics-terms-alphalist |
| 13 | http://www.dnafiles.org |
| 14 | http://www.dnalc.org |
| 15 | http://www.facingourrisk.org |
| 16 | http://www.genome.gov/10000409 |
| 17 | http://learn.genetics.utah.edu |
| 18 | http://www.kumc.edu/gec |
| 19 | http://ghr.nlm.nih.gov |
| 20 | http://www.genome.gov/glossary |
| 21 | http://www.cancer.gov/cancertopics/understandingcancer |
| 22 | http://www.genome.gov/Pages/EducationKit |
| 23 | http://www.cancer.gov/cancertopics/pdq/genetics/overview/healthprofessional/Tab le4 |
| 24 | http://www.bioethics.net/articles.php?viewCat=6 |
| 25 | http://bioethics.od.nih.gov |
| 26 | http://dnapatents.georgetown.edu |
| 27 | http://www.ornl.gov/sci/techresources/Human_Genome/elsi/elsi.shtml |
| 28 | http://www.genethics.ca |
| 29 | http://www.genome.gov/10002328 |
| 30 | http://www.geneticfairness.org/ginaresource_overview.html |
| 31 | http://www.genome.gov/Pages/PolicyEthics/GeneticDiscrimination/GINAInfoDoc.pdf |
| 32 | http://www.dnapolicy.org |
| 33 | http://www.sph.umich.edu/genpolicy |
| 34 | http://www.humgen.umontreal.ca/int |
| 35 | http://www.ncsl.org/IssuesResearch/Health/GeneticTechnologiesProject/tabid/1452 4/Default.aspx |
| 36 | http://www11.georgetown.edu/research/nrcbl/nirehg |
| 37 | http://www11.georgetown.edu/research/nrcbl/nirehg/scope.html |
| 38 | http://www.nsgc.org/Advocacy/NSGCCodeofEthics/tabid/155/Default.aspx |
| 39 | http://www.genome.gov/PolicyEthics/LegDatabase/pubsearch.cfm |
| 40 | http://thomas.loc.gov/home/thomas.php |
| 41 | http://ehrweb.aaas.org/ehr/books/index.html |
| 42 | http://www.cancer.gov/cancertopics/pdq/genetics/overview/healthprofessional/Tab le5 |
| 43 | http://www.geneticalliance.org/fhh |
| 44 | http://www.cdc.gov/genomics/famhistory/famhist.htm |
| 45 | http://www.ama-assn.org/ama/pub/physician-resources/medical-science/genetics-mo lecular-medicine/family-history.page |
| 46 | https://familyhistory.hhs.gov/fhh-web/home.action |
| 47 | http://www.nsgc.org/About/FamilyHistoryTool/tabid/226/Default.aspx |
| 48 | http://www.cancer.gov/cancertopics/pdq/genetics/overview/healthprofessional/Tab le6 |
| 49 | http://useast.ensembl.org/Homo_sapiens/blastview |
| 50 | http://cgap.nci.nih.gov |
| 51 | http://cbio.mskcc.org/cancergenes |
| 52 | http://www.ncbi.nlm.nih.gov/gene |
| 53 | http://www.sanger.ac.uk/genetics/CGP/cosmic |
| 54 | http://www.ihop-net.org/UniPub/iHOP |
| 55 | https://cgwb.nci.nih.gov/cgi-bin/hgGateway?org=Human&%3bdb=hg18&% 3b |
| 56 | http://www.wiley.com/legacy/products/subject/life/borgaonkar |
| 57 | http://useast.ensembl.org/index.html |
| 58 | http://compbio.ornl.gov/channel |
| 59 | http://genome.wustl.edu/genomes/view/homo_sapiens |
| 60 | http://snp.cshl.org |
| 61 | http://www.lovd.nl |
| 62 | http://mutview.dmb.med.keio.ac.jp/MutationView/jsp/mutview/index.jsp?db=cancer |
| 63 | http://www.ncbi.nlm.nih.gov/Genomes |
| 64 | http://genome.cse.ucsc.edu |
| 65 | http://www.cancer.gov/cancertopics/pdq/genetics/overview/healthprofessional/Tab le7 |
| 66 | http://www.bwhct.nhs.uk/genetics-cemg-home.htm |
| 67 | http://www.genetics.edu.au/home |
| 68 | http://www.genome.gov/Pages/Careers/HealthProfessionalEducation/geneticscompete ncy.pdf |
| 69 | http://www.egappreviews.org |
| 70 | http://www.marchofdimes.com/gyponline/index.bm2 |
| 71 | http://www.nchpeg.org/bssr/index.php |
| 72 | http://www.cincinnatichildrens.org/ed/clinical/gpnf/default.htm |
| 73 | http://www.g-2-c-2.org |
| 74 | http://iml.dartmouth.edu/education/cme/Genetics |
| 75 | http://genes-r-us.uthscsa.edu/resources/genetics/primary_care.htm |
| 76 | http://www.gappnet.org/gappnet |
| 77 | http://www.meddean.luc.edu/lumen/MedEd/genetics/core_curric.htm |
| 78 | http://www.nchpeg.org |
| 79 | http://www.nchpeg.org/index.php?option=com_content&view=article&id=73:c ore-competencies&catid=38:slideshow |
| 80 | http://practice.sph.umich.edu/mphtc/site.php?module=courses_one_online_course&a mp;id=108 |
| 81 | http://www.cancer.gov/cancertopics/pdq/genetics/overview/healthprofessional/Tab le8 |
| 82 | http://www.health.ny.gov/regulations/task_force/reports_publications/screening. htm |
| 83 | http://www.nuffieldbioethics.org/sites/default/files/Pharmacogenetics%20Report. pdf |
| 84 | http://www.hhs.gov/ohrp/archive/irb/irb_chapter5ii.htm |
| 85 | http://www.cancer.gov/cancertopics/pdq/genetics/overview/healthprofessional/Tab le9 |
| 86 | http://www.abgc.net/Certification/certification.asp |
| 87 | http://www.abmg.org/pages/training_options.shtml |
| 88 | http://www.acmg.net//AM/Template.cfm?Section=Home3 |
| 89 | http://www.ashg.org |
| 90 | http://www.geneticnurse.org |
| 91 | http://www.genetics-gsa.org |
| 92 | http://www.isong.org |
| 93 | http://www.nsgc.org |
| 94 | http://www.cancer.gov/cancertopics/pdq/genetics/overview/healthprofessional/Tab le10 |
| 95 | http://www.cancer.gov/bcrisktool/Default.aspx |
| 96 | http://www.cancer.gov/colorectalcancerrisk/colorectal-cancer-risk.aspx |
| 97 | http://www.diseaseriskindex.harvard.edu/update |
| 98 | https://familyhealthlink.osumc.edu/Notice.aspx |
| 99 | http://www.cancer.gov/melanomarisktool |
| 100 | http://www.northshore.org/genetics/mygenerations |
| 101 | http://www.cancer.gov/cancertopics/pdq/genetics/overview/healthprofessional/Tab le11 |
| 102 | http://hugenavigator.net/HuGENavigator/checkerComplexStartPage.do |
| 103 | http://hnpccpredict.hgu.mrc.ac.uk |
| 104 | https://www.afcri.upenn.edu:8022/itacc/penn2/index.asp |
| 105 | http://dana-farber.prod.dfcidev.org/pat/cancer/gastrointestinal/crc-calculator/ default.asp |
| 106 | http://www.cancer.gov/cancertopics/pdq/genetics/overview/healthprofessional/Tab le12 |
| 107 | http://www.genome.gov/gwastudies |
| 108 | http://bioethics.georgetown.edu/nirehg |
| 109 | http://hugenavigator.net/HuGENavigator/home.do |
| 110 | http://www.cancer.gov/cancertopics/pdq/genetics/overview/healthprofessional/Tab le13 |
| 111 | http://www.cdc.gov/genomics/default.htm |
| 112 | http://www.gemcris.od.nih.gov/Contents/GC_HOME.asp |
| 113 | http://www.cancer.gov/cancertopics/pdq/genetics |
| 114 | http://www.genome.gov |
| 115 | http://www.niehs.nih.gov/research/supported/programs/egp |
| 116 | http://genomics.energy.gov |
| 117 | http://www.ask.hrsa.gov/search_materials.cfm?type=basic |