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Health Professionals

	A Roadmap for the Integration of Genetics and Genomics into Health and Society
	Secretary's Advisory Committee on Genetics, Health, and Society (SACGHS)
	2004
	oba.od.nih.gov/oba/sacghs/reports/SACGHSPriorities.pdf
	Advisory Committee on Heritable Disorders and Genetic Diseases in Newborns and Children
	U.S. Dept of Health & Human Services
	http://www.hrsa.gov/heritabledisorderscommittee/default.htm
	The Committee shall advise and guide the Secretary of Health & Human Services regarding the most appropriate application of universal newborn screening tests, technologies, policies, guidelines and programs for effectively reducing morbidity and mortality in newborns and children having or at risk for heritable disorders.
	Advisory Committee on Heritable Disorders and Genetic Diseases in Newborns and Children
	U.S. Dept of Health & Human Services
	www.hrsa.gov/heritabledisorderscommittee/default.htm
	The new committee will make recommendations on grants and projects to help states and local public health agencies improve screening, counseling and health care services.
	Alternative sources of human pluripotent stem cells
	President’s Council on Bioethics
	2005
	hdl.handle.net/1805/751
	Assuring the Quality of Laboratory Practices in Genetic Testing
	Division of Laboratory Systems, Centers for Disease Control
	2007
	wwwn.cdc.gov/dls/genetics/default.aspx
	This agency helps to develop laboratory standards with other government agencies, professional organizations, etc. It also helps integrating genetic testing into clinical and public health practice.
	Asthma Genomics: Implications for Public Health
	University of Washington, Center for Genomics and Public Health
	2007
	www.cdc.gov/genomics/training/perspectives/asthma.htm
	Evaluates the potential contribution of genomics research towards reducing asthma-related morbidity and mortality. Asthma is found disproportionately among children and minorities.
	Basic Concepts of Hemophilia (Provider Guide)
	Centers for Disease Control
	www.cdc.gov/ncbddd/hbd/documents/ProviderGuide.pdf
	Basic care of hemophiliacs in a 16 page document.
	Birth Defects Tracking and Prevention One Year Later
	Trust for America's Health
	2003
	healthyamericans.org/newsroom/releases/release042903.pdf
	State monitoring programs and birth defects registries can help track and prevent birth defects.
	Birth Defects Tracking and Prevention: Too Many States Are Not Making the Grade
	Trust for America's Health
	2002
	healthyamericans.org/reports/birthdefects02/
	State monitoring programs and birth defects registries can help in tracking and preventing birth defects.
	Brain Structures Most Sensitive to Prenatal Alcohol Exposure
	National Organization on Fetal Alcohol Syndrome
	2007
	www.nofas.org/healthcare/QIP%20Materials/Patient%20Education%20Materials/FAS%20Brain%20Card.pdf
	Illustrations of a normal brain and a brain exposed to alcohol prenatally.
	Breast and Ovarian Cancer Family Registries
	National Cancer Institute
	epi.grants.cancer.gov/CFR/
	Researchers may apply to use the Cancer Family Registry resources to support research in genetic epidemiology, and gene-environment interactions.
	Audience is researchers
	Cancer Chromosomes
	National Center for Biotechnology Information
	www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=cancerchromosomes
	Three databases, the NCI/NCBI SKY/M-FISH & CGH Database, the NCI Mitelman Database of Chromosome Aberrations in Cancer, and the NCI Recurrent Aberrations in Cancer , are now integrated into NCBI's Entrez system as Cancer Chromosomes
	Cancer Genetics Network: Query the CGN Core
	Cancer Genetics Network, National Cancer Institute
	hedwig.mgh.harvard.edu/cgn/cgn_core_query
	Description of the database of individuals with cancer or a family history of cancer, description of CGN services available for approved studies or research, information on applying.
	Audience is researchers
	Cancer Genetics Overview
	National Cancer Institute
	2009
	www.nci.nih.gov/cancerinfo/pdq/genetics/overview
	For health care professionals. Looks at the quality of evidence concerning susceptibility to cancer, clinical value of genetics tests and family history information, genetic counseling. Describes study populations, and the evidence related to screening and cancer prevention.
	Cancer Genetics Services Directory
	National Cancer Institute
	none listed
	www.cancer.gov/search/geneticsservices/
	A directory of individuals who provide services related to cancer genetics (cancer risk assessment, genetic counseling, genetic susceptibility testing, and others).
	Cancer Genome Anatomy Project
	National Cancer Institute
	cgap.nci.nih.gov/
	For researchers, the CGAP project seeks to determine the gene expression profiles of normal, precancer, and cancer cells. The CGAP project one of seven supported research initiatives of the National Cancer Institute Center For Bioinformatics.
	Cancer Genomics
	National Cancer Institute
	2006
	newscenter.cancer.gov/cancertopics/understandingcancer/cancergenomics
	Slides of cancer genetic topics.
	Center for Bioinformatics (NCICB)
	National Cancer Institute
	ncicb.nci.nih.gov
	The NCI Center for Bioinformatics (NCICB) provides biomedical informatics support and integration capabilities to the cancer research community.
	Centers for Birth Defects Research and Prevention
	Centers for Disease Control
	www.cdc.gov/ncbddd/pub/cbdrpbk.pdf
	A PDF document that reviews birth defects research and lists the research centers in the U.S.
	Clinical Trials: Diseases and Abnormalities at or Before Birth
	National Institutes of Health, ClinicalTrials.gov
	clinicaltrials.gov/ct/screen/BrowseAny?path=%2Fbrowse%2Fby-condition%2Fhier%2FBC16.b&recruiting=true
	Links to clinical trials involving patients with birth defects or genetic disorders. These studies may be sponsored by the National Institutes of Health and other federal agencies, as well as, not for profit organizations, and private industry.
	Colon Cancer Family Registries
	Cancer Genetics Network, National Cancer Institute
	epi.grants.cancer.gov/CFR/about_colon.html
	Researchers may apply to use the Cancer Family Registry resources to support research in genetic epidemiology, and gene-environment interactions.
	Continuing Education Opportunities for Genetic Technologists
	Association of Genetic Technologists
	www.agt-info.org/EdBody.html
	The Association of Genetic Technologists offers the following educational opportunities. These are available for a fee to non-members and at a discount or free to members.
	Core Competencies in Genetics Essential for All Healthcare Professionals
	National Coalition for Health Professional Education in Genetics
	2007
	www.nchpeg.org/core/Core_Comps_English_2007.pdf
	The National Coalition for Health Professional Education in Genetics (NCHPEG) endorsed these core competencies in 2000. NCHPEG is an interdisciplinary group comprising leaders from approximately 120 diverse health professional organizations, consumer and voluntary groups, government agencies, private industries, managed-care organizations, and genetics professional societies.
	Coverage and Reimbursement of Genetic Tests and Services
	Secretary's Advisory Committee on Genetics, Health, and Society (SACGHS)
	2006
	oba.od.nih.gov/oba/sacghs/reports/CR_report.pdf
	Coverage and Reimbursement of Genetic Tests and Services - Powerpoint Slides
	Secretary's Advisory Committee on Genetics, Health, and Society (SACGHS)
	oba.od.nih.gov/oba/sacghs/reports/CR_slides_Feb2006.pdf
	Developmental and Reproductive Toxicology Database
	TOXNET (National Library of Medicine)
	toxnet.nlm.nih.gov/cgi-bin/sis/htmlgen?DARTETIC
	DART/ETIC is a bibliographic database on the National Library of Medicine's (NLM) Toxicology Data Network (TOXNET®). It covers teratology and other aspects of developmental and reproductive toxicology and contains over 100,000 references to literature published since 1965. DART/ETIC is funded by the U.S. Environmental Protection Agency, the National Institute of Environmental Health Sciences, the National Center for Toxicological Research of the Food and Drug Administration, and the NLM.
	Digital Collection Project
	Georgetown University, National Information Resource on Ethics and Human Genetics
	2008
	genethx.georgetown.edu/nirehgdigcol.htm
	NIREHG is digitizing selected monographs related to ethical, legal and social implications of genetics research and clinical practice.
	DNA Patents
	Georgetown University, National Information Resource on Ethics and Human Genetics
	2009
	dnapatents.georgetown.edu/
	This database serves as a resource for policy makers and members of the general public interested in fields like genomics, genetics and biotechnology. The DNA Patent Database (DPD) contains a collection of DNA-based patents and patent applications issued by the United States Patent and Trademark Office (USPTO) and makes the full-text of such patents and applications available to users at no cost.
	Does it Run in the Family?
	Genetic Alliance
	2009
	geneticalliance.org/familyhealthhistory
	Check out the Does It Run In the Family? toolkit in English and Spanish, for more information on why family health history is important, how to collect it, and what types of conditions run in the family.
	Early-Onset Familial Alzheimer Disease
	GeneReviews
	2007
	www.genetests.org/query?dz=alzheimer-early
	Economic Costs of Birth Defects
	March of Dimes
	2009
	www.marchofdimes.com/aboutus/680_2173.asp
	Costs per specific birth defect for care.
	Elements of Cancer Genetics Risk Assessment and Counseling
	National Cancer Institute
	2004
	www.nci.nih.gov/cancerinfo/pdq/genetics/risk-assessment-and-counseling
	For health professionals, describes current approaches for assessing and counseling people about their chance of having an inherited susceptibility to cancer. Sections include: cancer risk counseling, taking and analysis of a family history, risk, genetic testing, informed consent, pretest counseling, psychological impact, benefits, burdens and limitations of genetic susceptibility testing, and post-test education.
	Entrez Gene
	National Center for Biotechnology Information, National Library of Medicine
	www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=gene
	Entrez Gene provides a gene-based view of data from a wide range of genomes including the Human Genome. It supplies key connections in the nexus of map, sequence, expression, structure, functional, and homology data. Each record represents a single gene from a given organism. The minimum set of data includes a unique identifier or GeneID assigned by NCBI, a preferred symbol, and any of sequence information, map information, or official nomenclature from an authority list. Additional information also may include expression, structure, functional, and homology data, when available. Entrez Gene will one day replace NCBI's LocusLink.
	Entrez Protein
	National Center for Biotechnology Information
	www.ncbi.nlm.nih.gov/sites/entrez?db=protein
	The protein entries in the Entrez search and retrieval system have been compiled from a variety of sources, including SwissProt, PIR, PRF, PDB, and translations from annotated coding regions in GenBank and RefSeq.
	Environmental Genetics Group
	National Institute of Environmental Health Sciences
	2009
	www.niehs.nih.gov/research/atniehs/labs/lrb/enviro-gen/index.cfm
	The Environmental Genetics Group uses state-of-the-art methods in inhalation toxicology, pulmonary physiology and molecular genetics to study the role of genetics background as a susceptibility factor in environmental lung disease.
	European Directory of DNA Diagnostic Laboratories
	EDDNAL
	2008
	www.eddnal.com/
	Lists DNA-based diagnostic services for rare genetic conditions in Europe. EDDNAL also seeks to promote the highest standards of genetic testing as well as to facilitate research into the development of new diagnostic tests.
	Family History as a Tool for Public Health and Preventive Medicine: A Public Health Perspective
	Centers for Disease Control
	2007
	www.cdc.gov/genomics/training/conference/famhist.htm
	Can identifying families that have aggregations of chronic diseases be used to improve the health of at-risk family members and also of the population as a whole? Might this well-established observation be used as a tool for risk assessment, health promotion, and disease prevention? This Public Health Perspective contains information and resources for public health professionals about the potential for using family history as a tool for improving health and preventing or delaying the onset of common, chronic diseases.
	Family History Assessment: Strategies for Prevention of Cardiovascular Disease
	American Journal of Preventive Medicine
	2007
	www.cdc.gov/genomics/famhistory/famhist_assess.htm
	Journal article by Steven C. Hunt, Marta Gwinn and Ted D. Adams American Journal of Preventive Medicine 2003; 24(2):136-142
	Family History for Public Health and Preventive Medicine
	Centers for Disease Control
	2007
	www.cdc.gov/genomics/activities/famhx.htm
	Research agenda using family medical histories in public and preventive health.
	FAQ's About Workforce Competencies
	Centers for Disease Control
	2007
	www.cdc.gov/genomics/training/competencies/faqcomps.htm
	A brief discussion of public health genomic competencies that are being developed.
	FASTATS: Birth Defects / Congenital Anomalies
	National Center for Health Statistics
	2008
	www.cdc.gov/nchs/fastats/bdefects.htm
	Mortality (death) statistics, in-patient hospital care, trends in Spina Bifida and Anencephalus in the United States.
	Federal Policy (Stem Cells)
	National Institutes of Health
	2009
	stemcells.nih.gov/policy/defaultpage.asp
	National Institutes of Health's role in federal policy, NIH Stem Cell Task Force, President's Policy statements, Congressional statements and testimony, pending legislation.
	Fertility and Pregnancy Abnormalities
	National Institute of Occupational Safety and Health (NIOSH)
	www2.cdc.gov/NORA/teamposters/psfpa.html
	Poster discussing current research in workplace effects on reproductive health.
	GAPscreener
	Human Genome Epidemiology Network
	2008
	www.hugenavigator.net/HuGENavigator/HNDescription/opensource_GAP.htm
	GAPscreener: An Automatic Tool for Screening Human Genetic Association Literature in PubMed Using Support Vector Machine Technique
	Gene Prospector
	Human Genome Epidemiology Network
	2008
	hugenavigator.net/HuGENavigator/geneProspectorStartPage.do
	Gene Prospector is a bioinformatics tool designed to sort, rank, and display information about genes in relation to human diseases, risk factors and other phenotypes.
	GeneCards
	Weizmann Institute of Science
	2009
	bioinfo.weizmann.ac.il/cards/index.html
	GeneCards™ is a database of human genes, their products and their involvement in diseases. It offers concise information about the functions of all human genes that have an approved symbol, as well as selected others. Display the GeneCard of a random gene.
	GeneLoc
	Weizmann Institute of Science
	2009
	genecards.weizmann.ac.il/geneloc/index.shtml
	GeneLoc presents an integrated map for each human chromosome, based on data integrated by the GeneLoc algorithm.
	GeneNote
	Weizmann Institute of Science
	2008
	bioinfo2.weizmann.ac.il/cgi-bin/genenote/home_page.pl
	GeneNote is a database of human genes and their expression profiles in healthy tissues. It is based on Weizmann Institute of Science DNA array experiments, which were performed on the Affymetrix HG-U95 set A-E.
	GeneReviews: Search by Disease
	GeneTests GeneClinics
	2009
	www.genetests.org/servlet/access?submit=Disease+&id=8888891&prg=j&db=genestar&fcn=y&filename=/reviewsearch/searchdz.html&key=EAezauW6Pl-y2
	Search by disease name for genetic diseases. Updated reviews include diagnosis, clinical description, differential diagnosis, management, genetic counseling, molecular genetics, links to Medline searches, and a bibliography.
	Genetic Clinic Directory (United States)
	GeneTests, University of Washington and Children's Health System, Seattle
	2009
	www.genetests.org/servlet/access?id=8888891&key=KINKX7d7rHYr6&fcn=y&fw=fkGT&filename=/clinicsearch/searchclinic.html
	Directory search by state, service or specific disease.
	Genetic Crossroads
	Center for Genetics and Society
	1999 to Present
	geneticsandsociety.org/article.php?id=2942
	Free monthly email newsletter, includes archives back to 1999.
	Genetic Education Materials (GEM) Database
	National Newborn Screening and Genetics Resource Center
	transparency.cit.nih.gov/screening/
	The Genetic Education Materials (GEM) Database is a searchable listing of public health genetics policy documents and clinical genetics educational materials.
	Genetic Family History in Action Newsletter
	National Coalition for Health Professional Education in Genetics
	2008
	http://www.nchpeg.org/content.aspx?sc=newsletter&sub=12
	Newsletter for health professionals.
	Genetic Laboratories
	University of Kansas Medical Center
	2009
	www.kumc.edu/gec/prof/labs.html
	Directory of links to U.S. and foreign genetic laboratories.
	Genetic Laboratory Directory
	GeneTests, University of Washington and Children's Health System, Seattle
	2009
	www.geneclinics.org/servlet/access?id=8888891&key=RVHkqCz9UqrZy&fcn=y&fw=uXhA&filename=/labsearch/searchdztest.html
	Directory of genetic labs by locations in the US and abroad, or by disease.
	Genetic Landscape of Diabetes
	National Institute of Diabetes & Digestive & Kidney Diseases
	2004
	www.ncbi.nlm.nih.gov/books/bv.fcgi?rid=diabetes
	Free online book that covers the genetics of Diabetes Type I & Type II, Gestational Diabetes, and other types of diabetes
	Genetic Testing
	American Medical Association
	www.ama-assn.org/ama/pub/physician-resources/medical-science/genetics-molecular-medicine/related-policy-topics/genetic-testing.shtml
	AMA Policies Regarding Genetic Testing
	Genetic Testing for Breast and Ovarian Cancer Risk: The Psychosocial Issues
	Nursing Center
	2002
	www.nursingcenter.com/prodev/ce_article.asp?tid=287572
	Nursing information and continuing education about psychosocial issues associated with genetic testing for breast and ovarian cancer risk.
	Genetic Testing for Breast and Ovarian Cancer Susceptibility: A Public Health Perspective
	Centers for Disease Control
	2004
	www.cdc.gov/genomics/info/perspectives/breastcancer.htm
	This site provides facts and resources to public health professionals to help women and their families understand hereditary breast/ovarian cancer and the implications of genetic testing for BRCA1 and BRCA2.
	Genetics and Cancer Care: A Guide for Oncology Nurses
	Oncology Nursing Society
	www.ons.org/clinical/documents/pdfs/Kit.pdf
	A 32-page instructional guide for oncology nurses to use in patient care. Covers basic science and ethics.
	Genetics and Ethics Database
	National Information Resource on Ethics and Human Genetics
	bioethics.georgetown.edu/databases/GenETHX/index.htm
	Created at the Kennedy Institute of Ethics, search for journal articles, book chapters, laws, court decisions, reports, news articles and audiovisuals relating to ethics and public policy issues in genetics. For information on obtaining documents, read How to obtain documents.
	Genetics Education and Underserved Populations: Summary of the Literature
	Health Resources and Services Administration
	2004
	genes-r-us.uthscsa.edu/abt_lit_review.pdf
	Genetic services, including testing and counseling for minorities.
	Genetics of Alcoholism
	National Institute on Alcohol Abuse and Alcoholism
	2003
	pubs.niaaa.nih.gov/publications/aa60.htm
	Published in Alcohol Alert No. 60, July 2003.
	Genetics of Alzheimer’s Disease
	American Medical Association
	www.ama-assn.org/ama1/pub/upload/mm/464/geneticsofalzheimers.pdf
	A brief summary of the molecular nature of Alzheimer's Disease and the genetic tests used in diagnosis.
	Genetics of Bipolar Disorder
	American Medical Association
	www.ama-assn.org/ama1/pub/upload/mm/464/bipolar-disorder.pdf
	A summary of current knowledge about the genetics of bipolar disorder.
	Genetics of Breast and Ovarian Cancer
	National Cancer Institute
	2008
	www.nci.nih.gov/cancerinfo/pdq/genetics/breast-and-ovarian
	Coverage includes family history as a risk factor, major genes, genetic polymorphisms, interventions, psychosocial issues in inherited breast cancer.
	Genetics of Colon Cancer
	National Cancer Institute
	2009
	www.nci.nih.gov/cancerinfo/pdq/genetics/colorectal
	Genetics of colon cancer are complex, roughly 25% of patients have colorectal cancer that suggests a genetic contribution or common exposures to environmental agents, or both.
	Genetics of Colon Cancer: Screening for Endometrial Cancer in HNPCC Families
	National Cancer Institute
	2009
	www.nci.nih.gov/cancerinfo/pdq/genetics/colorectal
	Hereditary Nonpolyposis Colorectal Cancer (HNPCC) is associated with an increased risk of endometrial cancer.
	Genetics of Medullary Thyroid Cancer
	National Cancer Institute
	2004
	www.cancer.gov/cancerinfo/pdq/genetics/medullarythyroid
	Expert review of the genetics of medullary thyroid cancer including genetic testing, genetic counseling, and psychosocial issues.
	Genetics of Multiple Sclerosis
	American Medical Association
	www.ama-assn.org/ama1/pub/upload/mm/464/genetics_of_ms.pdf
	A short summary of the currently known genetic basis of multiple sclerosis.
	Genetics of Prostate Cancer
	National Cancer Institute
	www.nci.nih.gov/cancerinfo/prevention-genetics-causes/prostate
	Expert-reviewed information summary of the genetics of prostate cancer, information about specific genes and family cancer syndromes. The summary also contains information about screening, research, prevention and psychosocial issues associated with genetic testing and counseling of individuals who may have a hereditary prostate cancer.
	Genetics of Type 2 Diabetes
	American Medical Association
	www.ama-assn.org/ama1/pub/upload/mm/464/genetics-type-2-diabetes.pdf
	A short summary of what is currently known about the genetic basis of Type 2 diabetes.
	Genetics QuickBibs
	National Information Resource on Ethics and Human Genetics
	2009
	bioethics.georgetown.edu/nirehg/quickbibsgen.htm
	Locate the 100 most recent citations on the ethics of: behavioral genetics, eugenics, gene therapy, genetic counseling, genetic research, biohazards, genetic screening, genetic testing, human ancestry, genome mapping, and the Human Genome Project.
	Genetics Services State Plan for Indiana
	Indiana State Department of Health
	2002
	genes-r-us.uthscsa.edu/resources/genetics/indiana_geneticsplan.pdf
	GeneTide
	Weizmann Institute of Science
	2007
	genecards.weizmann.ac.il/genetide-bin/tide.cgi
	GeneTide is an automated system for human transcripts (mRNA & ESTs) annotation and elucidation of GeneTide is an automated system for human transcripts (mRNA & ESTs) annotation and elucidation of GeneTide is an automated system for human transcripts (mRNA & ESTs) annotation and elucidation of de-novo genes.
	Genome Glossary
	Human Genome Project
	2008
	www.ornl.gov/sci/techresources/Human_Genome/glossary/
	A glossary of genetic terms from the DOE Human Genome Program.
	Genome Programs of the U.S. Department of Energy, Office of Science
	Office of Biological and Environmental Research of the U.S. Department of Energy Office of Science
	genomics.energy.gov/
	Human Genome Project and Microbial Genome Research
	Genomic Competencies for the Public Health Workforce
	Genomic and Disease Prevention (CDC)
	2007
	www.cdc.gov/genomics/training/competencies/comps.htm
	Genomics & Health Weekly Update
	Centers for Disease Control
	Weekly
	www.cdc.gov/genomics/update/current.htm
	Weekly update provides information about the impact of human genetic research on disease prevention and public health. Includes new articles in PubMed.
	Genomics and Its Impact on Science and Society The Human Genome Project and Beyond
	U.S. Department of Energy Human Genome Program
	2008
	www.ornl.gov/sci/techresources/Human_Genome/publicat/primer2001/index.shtml
	Defines basic genetic terms and overviews human genome mapping and sequencing, model organism research, informatics, and the impact of the Human Genome Project.
	Genotype Prevalence Database
	Centers for Disease Control
	2007
	www.cdc.gov/genomics/search/aboutGTP.htm
	The Office of Genomics and Disease Prevention has established an online repository for human genotype prevalence data from selected studies. The database includes a description of the study population, references to the published report or the researcher’s contact information, and genotype frequency data that are stratified by geographic area, and in some instances, race and gender. The database presents genotype frequencies in preference to allele frequencies because a) genotypes have been proposed for researchers who either report or appraise studies of prevalence and gene-disease associations, b) specific genotypes, not alleles, are often associated with disease risk, and c) genotype frequency data can be used to calculate allele frequency (2)
	Global Registry and Database on Craniofacial Anomalies
	World Health Organization
	2009
	www.who.int/genomics/anomalies/idcfa/en/
	Links to full text of the Global Registry and Database on Craniofacial Anomalies 2003, and the World Atlas of Birth Defects 2003.
	Harnessing Genetics to Prevent Disease & Improve Health: A State Policy Guide
	Partnership for Prevention
	2003
	genes-r-us.uthscsa.edu/resources/genetics/geneticsguide.pdf
	A 501(c)3, Partnership for Prevention offers high-quality information about prevention to policymakers in this 40 page PDF document.
	HGVbaseG2P
	Research team of Professor Anthony Brookes in the Karolinska Institute (Sweden) and staff at Interactiva GmbH (Germany)
	2008
	www.hgvbaseg2p.org/index
	The Human Genome Variation database of Genotype-to-Phenotype information (HGVbaseG2P) provides a centralized compilation of summary level findings from genetic association studies, both large and small. Search by study, phenotypes, or marker.
	How Genetics Changes Daily Practice: Look Back to Move Forward
	Nursing Center
	2004
	www.nursingcenter.com/prodev/ce_article.asp?tid=427634
	Nursing information and continuing education on the role genetics plays in health and disease and incorporate genetic questions into patient assessment. In the near future, individual risk profiling based on a person’s genetic makeup will be used to customize prevention, treatment, and ongoing management of health conditions.
	HuGE Investigator Browser
	Human Genome Epidemiology Network
	2008
	hugenavigator.net/HuGENavigator/investigatorStartPage.do
	HuGE Investigator Browser is a search engine for finding investigators or collaborators in in genetic associations and other human genome epidemiology research based on study interests such disease/condition, environmental risk factors, or gene.
	HuGE Literature Finder
	Human Genome Epidemiology Network
	2008
	hugenavigator.net/HuGENavigator/startPagePubLit.do
	HuGE Literature Finder is a search engine for finding published literature on genetic associations and other human genome epidemiology.
	HuGE Risk Translator
	Human Genome Epidemiology Network
	2008
	hugenavigator.net/HuGENavigator/checkerComplexStartPage.do
	HuGE Risk Translator is a tool to help evaluate the predictive ability of genetic markers by calculating a variety of indicators in epidemiology, clinical validity & utility and public health.
	HuGE Watch
	Human Genome Epidemiology Network
	2008
	hugenavigator.net/HuGENavigator/startPageWatch.do
	HuGE Watch is designed for tracking the evolution of published HuGE research dynamically based on the literature repository in the database. It allows users to view the temporal trends and the geographical distributions of the published HuGE literature, HuGE investigators, gene studied and disease studied in HuGE field.
	Human Cloning
	American Medical Association
	www.ama-assn.org/ama/pub/category/4560.html
	Although there are social, legal and ethical issues about human cloning, an important concern is that we do not fully understand the science behind the successes from animal cloning experiments.
	Human Gene Mutation Database
	Institute of Medical Genetics, University of Wales College of Medicine
	2008
	www.hgmd.cf.ac.uk/ac/index.php
	Attempts to collate known (published) gene lesions responsible for human inherited disease.
	Human Genome Epidemiology Network
	Office of Genomics and Disease Prevention (OGDP), Centers for Disease Control
	2008
	hugenavigator.net/
	HuGE Navigator provides access to a continuously updated knowledge base in human genome epidemiology, including information on population prevalence of genetic variants, gene-disease associations, gene-gene and gene- environment interactions, and evaluation of genetic tests.
	Human Genome Epidemiology: A Scientific Foundation for Using Genetic Information to Improve Health and Prevent Disease
	Centers for Disease Control
	2004
	www.cdc.gov/genomics/training/books/HuGE/Cover.htm
	Full text book by Muin Khoury, Julian Little and Wylie Burke. Published by Oxford Press, 2004.
	Human Genome Project Black Bag Insert in the Journal for Minority Medical Students
	Journal for Minority Medical Students
	2002
	www.ornl.gov/sci/techresources/Human_Genome/publicat/jmmbbag.pdf
	32-page section from the Spring 2002 issue of the Journal for Minority Medical Students covering basic genetics, Zeta Phi Beta's genetics education program, the genetics of sickle cell anemia, medical genetics, and ELSI issues.
	Human Genome Variation Society
	Human Genome Variation Society
	2009
	www.genomic.unimelb.edu.au/mdi/dblist/dblist.html
	The Society aims to foster discovery and characterization of genomic variations including population distribution and phenotypic associations. We will promote collection, documentation and free distribution of genomic variation information and associated clinical variations and endeavor to foster the development of the necessary methodology and informatics.
	Human Mutation Databases
	United Kingdom HGMP Resource Centre
	www.biologie.uni-hamburg.de/b-online/library/genomeweb/GenomeWeb/human-gen-db-mutation.html
	Collection of human mutation and SNP databases.
	International Nucleotide Sequence Database Collaboration
	National Center for Biotechnology Information
	2006
	www.ncbi.nlm.nih.gov/projects/collab/
	European Molecular Biology Laboratory (EMBL/EBI) Nucleotide Sequence Database, Hinxton, UK, DNA Data Bank of Japan (DDBJ), Mishima, Japan, & GenBank
	International Skeletal Dysplasia Registry
	Cedars-Sinai Medical Center
	2008
	www.csmc.edu/3805.html
	The International Skeletal Dysplasia Registry is a referral center for research into the diagnosis, management and etiology of the skeletal dysplasias. Skeletal dysplasias are bone and cartilage disorders that affect the growth and development of the skeleton and result in short stature and dwarfism.
	Leading Categories of Birth Defects
	March of Dimes
	2009
	www.marchofdimes.com/aboutus/680_2164.asp
	Structural, metabolic, or congenital infection-caused birth defects. Also include Rh factor and fetal alcohol syndrome.
	Major Events in the U.S. Human Genome Project and Related Projects U.S. Human Genome Project and Related Projects
	Human Genome Project
	2008
	www.ornl.gov/sci/techresources/Human_Genome/project/timeline.shtml
	Timeline
	Management of Sickle Cell Disease
	National Heart, Lung and Blood Institute, Division of Blood Diseases and Resources
	2002
	www.nhlbi.nih.gov/health/prof/blood/sickle/sc_mngt.pdf
	188 pages, the 4th edition ( June 2002). This publication was developed by physicians, nurses, psychologists, and social workers who specialize in the care of children and adults with sickle cell disease and describes the current approach to counseling and also to management of many of the medical complications of sickle cell disease.
	Medication Selection by Genotype: How Genetics is Changing Drug Prescribing and Efficacy
	Nursing Center
	2004
	www.nursingcenter.com/prodev/ce_article.asp?tid=503763
	Nursing continuing education on genetic testing and screening to determine the efficacy of drugs for individuals. This will be especially useful with regard to drugs that are expensive or highly toxic or have a narrow therapeutic range. And as medication prescribing based on genetics becomes a clinical reality, nurses will help patients understand the benefits, limitations, and risks involved.
	Microbial Genomics
	Human Genome Project
	2008
	microbialgenomics.energy.gov/
	Monitoring Stem Cell Research
	President’s Council on Bioethics
	2004
	hdl.handle.net/1805/759
	NASW Standards for Integrating Genetics into Social Work Practice
	National Association of Social Workers
	2003
	www.socialworkers.org/practice/standards/GeneticsStdFinal4112003.pdf
	The emerging role of genetics in health and medicine requires that social workers become familiar with ethical, legal, and psychosocial genetic issues. They can then offer psychosocial services to people with genetic disorders, and help them with issues relating to genetic discrimination in health and life insurance, employment and adoption.
	National Birth Defects Prevention Network
	2004
	www.nbdpn.org/NBDPN/
	Maintains a national network of state and population-based programs for birth defects surveillance and research to assess the impact of birth defects upon children, families, and health care; to identify factors that can be used to develop primary prevention strategies; and to assist families and their providers in secondary disabilities prevention. Maintains a listserve and publications, including a newsletter.
	National Birth Defects Prevention Study
	Public Health Reports 116 (Supplement 1):32-40, 2001
	2001
	www.cdc.gov/ncbddd/bd/documents/NBDPSarticle.pdf
	The study was designed to identify infants with major birth defects and evaluate genetic and environmental factors associated with the occurrence of birth defects.
	National Center for Biotechnology Information
	National Library of Medicine
	www.ncbi.nlm.nih.gov
	National Center for Biotechnology Information creates public databases, conducts research, and develops software tools for analyzing genome data.
	Neural Tube Defects: Prevention and Folic Acid
	Nursing Center
	2002
	www.nursingcenter.com/prodev/ce_article.asp?tid=269994
	Continuing education for nurses on the etiology of neural tube defects (NTDs) and the role of folic acid in their prevention.
	New Era in Newborn Screening: Saving Lives, Improving Outcomes
	Centers for Disease Control
	2002
	www.phppo.cdc.gov/PHTN/Newborn/
	The purpose of this continuing education webcase is to improve recognition, detection, and diagnosis leading to early intervention and effective management of metabolic disease, endocrine disorders, and hemoglobinopathies in newborns by physicians, nurses, and other health professionals.
	Newborn Genetic and Metabolic Disease Screening
	National Conference of State Legislatures
	www.ncsl.org/programs/health/genetics/newborn.htm
	The extent of screening varies throughout the states. Some conditions are so rare that testing may not be cost-effective. In other cases no treatment may exist. State experiences vary regarding laws or regulations, specific tests, oversight responsibilities, state advisory boards, processes for informing parents, exemptions, storage policies and use of blood samples and payment for newborn screen procedures.
	Newborn Screening and Genetics
	Association of Public Health Laboratories
	2008
	www.aphl.org/aphlprograms/nsg/Pages/default.aspx
	The Association of Public Health Laboratories (APHL) Newborn Screening and Genetics program strengthens the role of public health laboratories in genetics testing and designs strategies to address changes in the newborn screening testing field.
	Newborn Screening Quality Assurance Program
	Centers for Disease Control
	2009
	www.cdc.gov/labstandards/nsqap.htm
	The Newborn Screening Branch, Division of Laboratory Sciences, operates the Newborn Screening Quality Assurance Program (NSQAP). NSQAP is a voluntary, non-regulatory program to help state health departments and their laboratories maintain and enhance the quality of test results. The program is operated in partnership with the Association of Public Health Laboratories. The program provides services to more than 73 domestic newborn screening laboratories, 28 manufacturers of diagnostic products, and laboratories in 53 countries. NSQAP has been the only comprehensive source of essential quality assurance services for dried-blood-spot testing for over 26 years.
	NIOSHTIC-2
	National Institute of Occupational Safety and Health (NIOSH)
	www2a.cdc.gov/nioshtic-2/n2info.asp
	NIOSHTIC-2 is a searchable bibliographic database of occupational safety and health publications, documents, grant reports, and other communication products supported in whole or in part by the National Institute for Occupational Safety and Health (NIOSH).
	Nucleic Acids Research Database Categories List
	Nucleic Acids Research, Oxford Journals
	2009
	www3.oup.co.uk/nar/database/c/
	Nucleic Acids Research publishes an annual database issue with a publicly accessible (note: on the web things can change quickly) list of molecular biology databases.
	Obesity and Genetics: A Public Health Perspective
	National Office of Public Health Genomics
	2007
	www.cdc.gov/genomics/training/perspectives/obesity.htm
	Contains information and commentary on discoveries of genetic variants, related disease outcomes, and the complex social, legal, and ethical issues surrounding genetic discoveries.Includes training materials.
	OMIM: Online Mendelian Inheritance in Man
	National Center for Biotechnology Information
	www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=OMIM
	This database is a catalog of human genes and genetic disorders and contains clinical information and references. It also links to MEDLINE for additional information.
	Ordering Genetic Testing
	GeneTests, University of Washington and Children's Health System, Seattle
	2004
	www.genetests.org/servlet/access?id=8888892&key=QIAvq4RCJhG44&fcn=y&fw=BxOi&filename=/concepts/primer/primerordertest.html
	Topics are: what is genetic testing? Uses of genetic testing, ancillary services, what is a genetics consultation?, who should have a genetics consultation?, ordering genetic testing.
	Oversight of Genetic Testing (Genetics Brief)
	Health Resources and Services Administration
	2002
	www.ncsl.org/programs/health/genetics/Oversight.pdf
	Overview of the regulation and oversight of genetic testing laboratories.
	Pancreatic Cancer Registries
	Pancreatica
	2009
	www.pancreatica.org/registries.html
	Links to pancreatic cancer registries worldwide.
	Perinatal Nursing Education
	March of Dimes
	2009
	www.marchofdimes.com/nursing/index.bm2?cid=00000003
	Continuing education for nurses, including both online and print modules.
	Peristats: An Interactive Perinatal Data Resource
	March of Dimes
	2009
	peristats.modimes.org/
	Peristats is an interactive perinatal data resource providing maternal, infant and child health-related data at the state level and, for many indicators, at the county level. Data are also available for the District of Columbia, Puerto Rico and the United States.
	Pharmacogenomics
	Lab Tests Online
	2006
	www.labtestsonline.org/understanding/features/pharmacogenomics.html
	Introduction to pharmacogenomics or how an individual's genetic makeup can influence how he or she responds (or doesn't respond) to different drug treatments.
	Plunkett's Biotech & Genetics Industry Almanac
	Plunkett Research Ltd.
	www.plunkettresearch.com/health/biotech_almanac.htm
	Information about purchasing this directory of biotechnology, genetics, genetic engineering, genomics and proteomics industry market research, business analysis and competitive intelligence. Also includes pharmaceuticals, genetically modified foods and bioagriculture (AGRIBIO), diagnostics, personalized medicine, regulation, research and development, stem cells, cloning, drug discovery, clinical trials, bioanalysis, partnerships, funding distribution and profiles of leading biotechnology companies. INDIANA ONLY: You can access last year's edition of this directory by going to: INSPIRE, click on Search INSPIRE Databases; Select Individual Databases; Click on Business Source Premier. Click on the Publications tab at the top of the page and type in Plunkett.
	Policy Issues Associated with Undertaking A New Large U.S. Population Cohort Study of Genes, Environment, and Disease
	Secretary's Advisory Committee on Genetics, Health, and Society (SACGHS)
	2007
	oba.od.nih.gov/SACGHS/sacghs_documents.html#GHSDOC_010
	Preimplantation Genetic Diagnosis: A Discussion of Challenges, Concerns, and Preliminary Policy Options Related to the Genetic Testing of Human Embryos
	Genetics & Public Policy Center
	2004
	www.dnapolicy.org/images/reportpdfs/PGDDiscussionChallengesConcerns.pdf
	Preimplantation genetic diagnosis (PGD)-technology that allows parents to choose which embryos to implant in the mother's womb based on genetic test results. They can identify and select the characteristics of their children. The arrival of PGD has engendered a host of new scientific, social, ethical and political quandaries
	Promoting Quality Laboratory Testing for Rare Diseases: Keys to Ensuring Quality Genetic Testing
	Centers for Disease Control
	2004
	www.phppo.cdc.gov/dls/genetics/RareDiseaseConf.aspx
	Rare diseases collectively affect an estimated 25 million, or more than 1 in 12 individuals in the United States alone. The majority of the 6,000 rare diseases known today are considered genetic conditions, making genetic testing an essential element of the diagnosis and management of these patients and their families. However, genetic testing is currently available for only a small portion of rare diseases. Additionally, for many conditions testing may be available from only one or a few laboratories worldwide, from a single foreign laboratory, or from laboratories primarily conducting research studies. Currently, there is no established process to move potential tests from the research phase to a clinical laboratory setting.
	Public Health Genomics
	National Cancer Institute
	2009
	cancercontrol.cancer.gov/od/phg/index.html
	Cancer control and population sciences
	Public Health Genomics
	Centers for Disease Control
	2009
	www.cdc.gov/genomics/
	Promotes the integration of genomics into public health research, policy, and practice in order to improve the lives and health of all people. Public Health Genomics is an emerging field that assesses the impact of genes and their interaction with behavior, diet and the environment on population health.
	Realizing the Potential of Pharmacogenomics: Opportunities and Challenges
	Secretary's Advisory Committee on Genetics, Health, and Society (SACGHS)
	2008
	oba.od.nih.gov/oba/SACGHS/reports/SACGHS_PGx_report.pdf
	Recombinant DNA and Gene Transfer
	Office Of Biotechnology Activities, National Institutes of Health
	www4.od.nih.gov/oba/Rdna.htm
	Monitor human genetics research (basic research and clinical research), anticipate future ethical, legal, social issues. Develop and implement NIH policies and procedures for Recombinant DNA Activities, and Human Gene Transfer. Liaison to national and international organizations concerned with Recombinant DNA, Human Gene Transfer, Genetic Technologies
	Researchers
	Regional and State Genetics (Non-Federal)
	Office of Genomics and Disease Prevention (OGDP), Centers for Disease Control
	2007
	www.cdc.gov/genomics/links/regional.htm
	Links to regional genetics networks and state public health department programs in the area of genetics.
	Reprotox
	Reproductive Toxicology Center
	2008
	www.reprotox.org/Default.aspx
	REPROTOX ® is a fee-based database that contains commentaries on the potentially harmful effects of chemicals and physical agents on human pregnancy, reproduction, and development. The REPROTOX ® system was developed as an information source for laboratory scientists, practicing physicians, and government agencies. Non-professional users may require additional information to use it effectively.
	S*Star Bioinformatics Online Education
	University of California, San Diego
	2004
	www.s-star.org/course_instruction.html
	The S* group of teaching institutions have formed a global alliance to provide a global, unified bioinformatics learning environment (GLOBULE) made up of modular courses in the disciplines of genomics, bioinformatics, and medical informatics.
	Science Primer: Bioinformatics
	National Center for Biotechnology Information
	2004
	www.ncbi.nlm.nih.gov/About/primer/bioinformatics.html
	Description of bioinformatics - the field that merges biology, computer science and information technology.
	Science Primer: Expressed Sequence Tags
	National Center for Biotechnology Information
	2004
	www.ncbi.nlm.nih.gov/About/primer/est.html
	Expressed sequence tags (ESTs) are small pieces of DNA generated by sequencing an expressed gene.
	Science Primer: Genome Mapping
	National Center for Biotechnology Information
	2004
	www.ncbi.nlm.nih.gov/About/primer/mapping.html
	Description of genetic maps and physical maps.
	Science Primer: Microarrays
	National Center for Biotechnology Information
	2007
	www.ncbi.nlm.nih.gov/About/primer/microarrays.html
	Using an array and DNA samples, scientists can determine the expression levels of different genes. They can also look at gene expression in disease states and compare to normal gene expression.
	Science Primer: Molecular Biology
	National Center for Biotechnology Information, National Library of Medicine
	2004
	www.ncbi.nlm.nih.gov/About/primer/genetics.html
	A three part basic introduction for beginners. What is a cell, What's in a genome, and Molecular Genetics. Illustrations
	Science Primer: Molecular Modeling
	National Center for Biotechnology Information
	2004
	www.ncbi.nlm.nih.gov/About/primer/molecularmod.html
	Deals with the molecular modeling of protein structure and the relationship of structure to function.
	Science Primer: Pharmacogenomics
	National Center for Biotechnology Information
	2004
	www.ncbi.nlm.nih.gov/About/primer/pharm.html
	Pharmacogenomics is the study of inherited variations in genes that dictate drug response and looks at ways these variations can be used to predict good, bad, or no responses to a drug.
	Science Primer: SNPs
	National Center for Biotechnology Information
	2007
	www.ncbi.nlm.nih.gov/About/primer/snps.html
	Single nucleotide polymorphism is a small genetic variation that can occur within a person's DNA sequence.
	Single Neucleotide Polymorphism
	National Center for Biotechnology Information
	2008
	www.ncbi.nlm.nih.gov/SNP/
	Statement of the Public Affairs Committee of the Teratology Society on the Importance of Smoking Cessation During Pregnancy
	Teratology Society
	2002
	teratology.org/pubs/PAC_Smoking_Statement_Aug03.pdf
	Smoking has been proven to have detrimental effects on the fetus. This position paper lists the risks and consequences of maternal smoking.
	Statement of the Public Affairs Committee on the Fetal Alcohol Syndrome
	Teratology Society
	2002
	teratology.org/pubs/alcohol.pdf
	Position statement on fetal alcohol syndrome regarding prevention, diagnosis.
	Ten Leading Causes of Infant Mortality, United States, 1999
	March of Dimes
	2002
	www.marchofdimes.com/aboutus/1529.asp
	Leading causes of infant mortality.
	Teratology Society Public Affairs Committee Position Paper on Thalidomide
	Teratology Society
	2000
	teratology.org/pubs/THALIDO.PDF
	Thalidomide is a serious cause of birth defects. After being off the market in the US for many years, it is now being prescribed for several inflammatory conditions. This position paper stress the strict guidelines that govern the prescribing of this drug, specifically excluding women who are, or who may become pregnant.
	The Challenges and Impact of Human Genome Research for Minority Communities
	Zeta Phi Beta Sorority, National Education Foundation, Human Genome Project
	2000
	www.ornl.gov/sci/techresources/Human_Genome/publicat/zetaphibeta/
	Conference proceedings
	Training Programs Guides for Genetics
	American Society of Human Genetics
	www.genednet.org/pages/grad_training.shtml
	Geographical index of institutions with genetics programs in the United States. Intended for undergraduate or graduate students or those who are considering careers in human genetics. Focuses only on programs that offer graduate and postgraduate training specifically designed to prepare individuals for careers in human genetics.
	Trends in Infant Mortality Attributable to Birth Defects--United States, 1980-1995
	MMWR 47(37):773-778.
	1998
	www.cdc.gov/mmwr/preview/mmwrhtml/00054921.htm
	Trends in Spina Bifida and Anencephalus in the United States, 1991-2005
	Centers for Disease Control
	2008
	www.cdc.gov/nchs/products/pubs/pubd/hestats/spine_anen.htm
	The increased consumption of folic acid has decreased the number of cases of spina bifida and anencephalus in the United States.
	U.S. System of Oversight of Genetic Testing: A Response to the Charge of the Secretary of Health and Human Services
	Secretary's Advisory Committee on Genetics, Health, and Society (SACGHS)
	2008
	oba.od.nih.gov/oba/SACGHS/reports/SACGHS_oversight_report.pdf
	UCSC Genome Browser
	Human Genome Epidemiology Network
	2006
	genome.ucsc.edu/cgi-bin/hgTracks?org=human&position=chr22&hgt.customText=http://www.hugenavigator.net/hugedata.bed
	A custom track built for HuGE data in the UCSC Genome Browser.
	Understanding CGAP: Expression Profiles, cDNAs, ESTs and Microarrays
	Science Behind the News, National Cancer Institute
	cgap.nci.nih.gov/
	Explains some of the techniques used to study molecular changes that occur in cancer and the purpose of the Cancer Genome Anatomy Project (CGAP).
	Universal Newborn Hearing Screening
	Maternal and Child Health Bureau
	mchb.hrsa.gov/programs/specialneeds/unhs.htm
	Hearing loss in infants can be diagnosed earlier, and treatment started earlier with newborn screening.
	Variant Name Mapper
	Human Genome Epidemiology Network
	2008
	hugenavigator.net/HuGENavigator/startPageMapper.do
	Variant Name Mapper is designed to map gene variant common names to their corresponding rs numbers using information compiled from the following open-access web sources: SNP500Cancer, SNPedia, pharmGKB, ALFRED, AlzGene, PDGene, SZgene, HuGE Navigator, LSDBs.