Public Health Genomics

Associations and Organizations

Federal

• Evaluation of Genomics Applications in Practice and Prevention (EGAPP) Working Group - Centers for Disease Control and Prevention - (Centers for Disease Control and Prevention (CDC))  - This group makes evidence-based clinical recommendations on genetic tests to help health care providers, policy makers and consumers make better decisions about the use of genetic tests in caring for patients.

• Genetics and Genomics of Obesity - National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK), NIH Resources about genetic linkages to obesity, including research, funding opportunities, and conferences.

• Genomics at FDA - (Food and Drug Administration (FDA) U.S.) 

• Laboratory Practice Evaluation and Genomics Branch (LPEGB) - Centers for Disease Control and Prevention - (Centers for Disease Control and Prevention (CDC))  - The LPEGB assesses the quality of laboratory practices in genetic testing with the goal of improving the public's health through continuous improvement in laboratory practice in human genetic testing.

• National Human Genome Research Institute (NHGRI) - (National Institutes of Health (NIH))  - NHGRI supports research to understand the structure and function of the human genome and its role in health and disease. A critical part its mission is the study of the ethical, legal and social implications of genome research. NHGRI also supports the training of investigators and the dissemination of genome information.

• Office of Population Genomics, National Human Genome Research Institute - (National Institutes of Health (NIH)) 

• Office of Public Health Genomics (OPHG) - (Centers for Disease Control and Prevention (CDC)) 

• Office of Rare Diseases Research - (National Institutes of Health (NIH)) 

• Pharmacogenetics Research Network - National Institute of General Medical Sciences - (National Institutes of Health (NIH))  - The NIH Pharmacogenetics Research Network (PGRN) enables multi-disciplinary research groups to conduct studies addressing research problems in pharmacogenetics, the study of how genes affect the way people respond to medicines. The ultimate goal of pharmacogenetics research is to help tailor medicines to people's unique genetic make-ups, making medicines safer and more effective for everyone.

• Public Health Genomics - Cancer Control and Population Sciences, National Cancer Institute - (National Cancer Institute, NIH (NCI)) 

• Secretary's Advisory Committee on Genetics, Health and Society - Department of Health and Human Services - (Department of Health and Human Services (HHS) U.S.)  - This Committee advises the Secretary of Health and Human Services on human health and societal issues raised by the development and use of genetic technologies to predict, diagnose, and treat disease. They also discuss the medical, ethical, legal, and social implications arising from their integration into clinical and public health practice.

International

• Foundation for Genomics and Population Health (PHG Foundation) - A charitable company registered in England and Wales working to achieve the responsible and evidence based application of genomics and all biomedical sciences to health.

• Genome-Based Research and Population Health International Network (GRaPH-Int) - Centre de recherche en droit public, Université de Montréal. - GRaPH-Int is a global collaboration of individuals and organizations with an interest in public health genomics. The network helps transform knowledge and technologies into public policies, programmes and services for the benefit of public health. bIOpOrtAL [sic] search covers CDC's National Office of Public Health Genomics, PHG Foundation, and HumGen International, a resource concerning ethical, legal and social issues in human genetics.

• Public Health Genomics European Network (PHGEN) - Funded by European Commission - This is the official website of the 2nd phase of the Public Health Genomics European Network (PHGEN) project, more specifically known as PHGEN II. The Public Health Genomics European Network (PHGEN) is a cornerstone in the development of Publich Health Genomics in Europe. PHGEN is coordinated from the European Centre for Public Health Genomics (ECPHG) at Maastricht University in The Netherlands.

Professional and Research and Advocacy

• Access to Credible Genetics (ATCG) Resources Network

• American College of Medical Genetics

• American Society of Gene and Cell Therapy - A non-profit medical, scientific, and professional organization devoted to the research and development of therapies that involve the introduction of genetic material and/or cells into the body to treat or prevent disease.

• American Society of Human Genetics (ASHG) - Professional membership organization for human genetics specialists worldwide that includes researchers, academicians, clinicians, laboratory practice professionals, genetic counselors, nurses and others involved in or with a special interest in human genetics.

• Center for Public Health and Community Genomics - University of Michigan

• Coalition of State Genetics Coordinators - The CSGC website includes a Survey of Nationwide Public Health Genetics Activities from 2002.

• Genetic Alliance - Non-profit health advocacy organization committed to transforming health through genetics with an open network connecting members of parent and family groups, community organizations, disease-specific advocacy organizations, professional societies, educational institutions, corporations, and government agencies.

• Genetics and Public Policy Center - Johns Hopkins University - Created in 2002 by Pew Charitable Trusts to help policymakers, the press, and the public understand and respond to the challenges and opportunities of genetic medicine and its potential to transform global public health. Includes discussion of the implementation of a compulsory web-based registry of genetic tests in the U.S.

• Genomics Forum - American Public Health Association - (American Public Health Association (APHA))  - The Genomics Forum is a growing, interdisciplinary group of individual members of the American Public Health Association who want to explore and contribute to the way that genetics and genomics will be used to affect the health of populations.

• The Genomics Institute - Wadsworth Center of the New York State Department of Health - (New York State Department of Health)  - The mission of the Genomics Institute is to translate the promise of genomics into public health practices. The goal is to use emerging genetic knowledge to improve health and quality of life.

• Human Genome Variation Society - The society aims to foster discovery and characterization of genomic variations including population distribution and phenotypic associations. It promotes collection, documentation and free distribution of genomic variation information and associated clinical variations.

• National Coalition for Health Professional Education in Genetics - NCHPEG provides educational resources in genetics and genomics for a broad range of health professionals. The coalition comprises individual and organizational members from genetics, diverse health professions, patient-advocacy groups, federal agencies, and the commercial sector.

• National Newborn Screening and Genetics Resource Center - Maternal and Child Health Bureau, Genetic Services Branch and the University of Texas Health Science Center at San Antonio, Department of Pediatrics. - Provides information and resources in the area of newborn screening and genetics to benefit health professionals, the public health community, consumers and government officials.

• National Society of Genetic Counselors - The majority of genetic counselors work in a traditional role as members of a healthcare team; counseling patients about genetic conditions, coordinating clinics, providing patient education, and educating other health professionals about genetics. Includes a Find a Counselor search tool.

• Personalized Medicine Coalition - The Personalized Medicine Coalition (PMC) is an independent, non-profit group including federal agencies, diagnostic companies and advocacy organizations that works to advance the understanding and adoption of personalized medicine for the ultimate benefit of patients.

State and Local

• ASTHO Genomics Project - (Association of State and Territorial Health Officials (ASTHO))  - ASTHO's Genomics project highlights the critical role state health agencies play in both promoting the appropriate application of genomics to public health practice and for protecting the public from any associated privacy risks.

• Chronic Disease Genomics Program - Utah Department of Health

• Hawaii Department of Health Genetics Program - Information about genetics grant projects, clinical resources, and genetics education.

• Michigan's Genetic Resource Center - Michigan Department of Community Health

• National Coordinating Center for the Genetics and Newborn Screening Regional Collaborative Groups - (Maternal and Child Health Bureau, Health Resources and Services Administration (MCHB))  - Regional genetics collaboratives that work to improve access to local genetic and newborn screening services, information, and resources for individuals and families with heritable disorders.

• Public Health Genomics - Connecticut Department of Public Health

• Public Health Genomics Program - Michigan Department of Community Health

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Data and Statistics

• Database of Genotypes and Phenotypes (dbGaP) - dbGaP was developed to archive and distribute the results of studies that have investigated the interaction of genotype and phenotype. Such studies include genome-wide association studies, medical sequencing, molecular diagnostic assays, as well as association between genotype and non-clinical traits.

• HuGE Navigator - Human Genome Epidemiology Network (HuGENet™) - An integrated, searchable knowledge base of genetic associations and human genome epidemiology in the published literature.

• Influenza Virus Resource - National Center for Biotechnology Information - (National Library of Medicine (NLM) U.S.)  - A browsing tool allows you to compare the sequenced variations of the influenza virus genome.

• National Newborn Screening Information System (NNSIS) database - A secure, Internet based, real-time, information collection and reporting system for capturing state and territorial newborn screening information hosted by the National Newborn Screening and Genetics Resource Center.

• Newborn Screening Coding and Terminology Guide - Includes standard codes and terminology for newborn tests for the conditions recommended for screening by the Advisory Committee on Heritable Disorders in Newborns and Children (ACHDNC) or by a state within the U.S.

• PhenX Toolkit - (National Human Genome Research Institute)  - The Toolkit provides standard measures related to complex diseases, phenotypic traits and environmental exposures. Use of PhenX measures facilitates combining data from a variety of studies, and makes it easy for investigators to expand a study design beyond the primary research focus.

• U.S. Genome Variation Estimates - National Office of Public Health Genomics - (Centers for Disease Control and Prevention (CDC))  - These variation estimates are the allele frequency and genotype prevalence estimates of human genetic variants for the entire U.S. population based on DNA data collected from participants in the Third National Health and Nutrition Examination Survey (NHANES III).

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Grants and Funding

• CDC Genomics Funding - (Centers for Disease Control and Prevention (CDC))  - In 2008, CDC's Office of Public Health Genomics (OPHG) started funding five new projects in state health departments and academic and research institutions and to translate human-genome information and applications into education, surveillance, and policy interventions.

• The Genes, Environment and Health Initiative (GEI) - (National Institutes of Health (NIH))  - NIH funded programs--The Genetics Program is a pipeline for analyzing genetic variation in groups of patients with specific illnesses. The Exposure Biology Program is an environmental technology development program to produce and validate new methods for monitoring environmental exposures that interact with a genetic variation to result in human diseases.

• Genetics and Public Policy Fellowship - (American Society of Human Genetics (ASHG), National Human Genome Research Institute)  - Fellowship to give genetics professionals an opportunity to contribute the policy-making process.

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Legislation and Policy

• Genetic Information Nondiscrimination Act (GINA) of 2008 - United States

• Genetic Testing and Screening in the Age of Genomic Medicine - (New York State Department of Health)  - Provides summary information and recommendations from the New York State Task Force on Life and the Law about genetic testing.

• Newborn Genetic and Metabolic Screening 2009 National Conference of State Legislatures

• Resources for States Genetic Planning

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Literature and Reports

• 2010 State Public Health Genomics Resource Guide - (Association of State and Territorial Health Officials (ASTHO))  - The guide highlights innovative approaches and challenges by states to integrate genomics into their public health programs with information and resources for states to assess their current work in genomics and identify options for developing their programs.

• Genetics Education and Training: Report of the Secretary's Advisory Committee on Genetics, Health, a - (Department of Health and Human Services (HHS) U.S.)  - The report describes the genetics education and training needs of point-of-care health professionals, the public health workforce, and patients and consumers and provides recommendations to address these needs.

• Genomics Publications - (Centers for Disease Control and Prevention (CDC))  - Publications from CDC's Office of Public Health Genomics (OPHG) including annual reports, books, and scientific articles.

• Implications of Genomics for Public Health - Committee on Genomics and the Public's Health in the 21st Century - (Institute of Medicine (IOM))  - This 2005 workshop report summarizes speaker presentations on major scientific and policy issues related to genomics and public health, major supports for and challenges to the translation of genetic research into population health benefits, and approaches for the integration of genomic information into strategies for promoting health and preventing disease. It was funded by a contract from the Centers for Disease Control and Prevention, Office of Genomics and Disease Prevention.

• Public Health Genomics - This journal indexed by PubMed formerly known as Community Genetics focuses on the translation of genome-based knowledge and technologies into public policy, disease prevention and the improvement of population health. Read abstracts online for free-subscription required to access full text.

• STrengthening the REporting of Genetic Association Studies (STREGA)- An Extension of the STROBE Statement - PloS Medicine

Newsletters

• Genomics & Health Impact Update - (Centers for Disease Control and Prevention (CDC))  - Weekly update that provides information about the impact of human genomic research on disease prevention and population health.

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Genomics Promotion, Education and Information

• CancerGEM KB - (Centers for Disease Control and Prevention (CDC))  - The Cancer Genomic Evidence-based Medicine Knowledge Base (CancerGEM KB) is a searchable online resource that provides access to scientific information on the use of genomic information in cancer care and prevention.

• Enviro-Health Links: Epigenomics - (Specialized Information Services Division)  - Provides links to resources related to epigenetics and epigenomics, scientific areas focused on changes in the regulation of gene activity and expression which are not dependent on gene sequence.

• GAPPNet: Genomic Applications in Practice and Prevention Network - (Centers for Disease Control and Prevention (CDC))  - Provides information on new developments in research, policies, and programs on the use of genomic applications to improve health and prevent disease.

• GeneEd - (National Human Genome Research Institute, National Library of Medicine (NLM) U.S.)  - Resource for students and teachers to learn about genetics. The website allows users to explore topics such as Cell Biology, DNA, Genes, Chromosomes, Heredity/Inheritance Patterns, Epigenetics/Inheritance and the Environment, Genetic Conditions, Evolution, Biostatistics, Biotechnology, DNA Forensics, and Top Issues in Genetics.

• Genetics Home Reference - (National Library of Medicine (NLM) U.S.)  - 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.

• Genomics and Health Impact Blog - (Centers for Disease Control and Prevention (CDC))  - Blog on the results of genomic research, evaluation, and programs conducted by CDC and other institutions around the world from a public health perspective.

• My Family Health Portrait - (Office of the Surgeon General, HHS)  - Internet-based family health history tool that makes it easy for consumers to assemble and share family health history information within the family and with health care practitioners. Better use of health history information can support more informed and personalized patient care.

• Talking Glossary of Genetic Terms - (National Human Genome Research Institute)  - Learning tool to help explain the terms and concepts used in genetic research. The glossary includes descriptions of genetic terms, images, animation, and links to related terms.

Academic Programs and Centers

• Center for Applied Genomics - International Center for Public Health

• Center for Genomics & Society - (University of North Carolina at Chapel Hill (UNC)) 

• Center for Public Health & Community Genomics - (University of Michigan (U-M)) 

• Center for Public Health Genomics - (University of Virginia (UVA)) 

• Genetic Services Policy Project (GSPP) - (University of Washington)  - The Genetic Services Policy Project (GSPP) aims to describe the current model of genetic services delivery, collect information from key stakeholders, and use stakeholder perspectives to translate genetics research into practice that will lead to more effective genetic service delivery models.

• Institute for Public Health Genetics - (University of Washington)  - The University of Washington Institute for Public Health Genetics (IPHG) provides broad, interdisciplinary training for future public health professionals, facilitates research in public health genetics, and serves as a resource for continuing professional education.

• NCMHD Center of Excellence for Nutritional Genomics - (National Institute on Minority Health and Health Disparities, NIH (NIMHD) USA) 

• Program in Molecular and Genetic Epidemiology - (Harvard School of Public Health) 

Competencies

• Genomic Competencies for the Public Health Workforce - (Centers for Disease Control and Prevention (CDC))  - The purpose of this activity is to present essential public health competencies that incorporate specific aspects of genomics and present the required core knowledge, skills, abilities, and crosscutting functions related to public health programs.

• Public Health Biology Illustrative Sub-competencies - (Association of Schools of Public Health (ASPH)) 

Genetic Testing

• At-Home Genetic Tests - Federal Trade Commission - This document cautions consumers about the marketing, sale, and use of at-home genetic tests.

• Direct To Consumer Genetic Testing: A Cross-Academies Workshop - The National Academy of Sciences' Committee on Science, Technology, and Law and Board on Life Sciences and the Institute of Medicine, an interdisciplinary ad hoc committee hosted a public workshop that brought together the scientific, medical, legal, and policy communities along with members of the public to explore the opportunities and challenges posed by direct-to-consumer genetic testing.

• Genetic Testing - National Human Genome Research Institute, (NIH)

• Genetic Testing Registry (GTR) - (National Center for Biotechnology Information, National Library of Medicine (NCBI))  - Provides a central location for voluntary submission of genetic test information to advance the public health and research into the genetic basis of health and disease. Users can search by test, condition, gene, genetic mutation, and laboratory.

Online Learning

• Genomics for Public Health Practitioners - Genomics for Public Health Practitioners is a 45-minute presentation that serves as an introduction to genomics and public health as well as the larger education resource called Six Weeks to Genomics Awareness. It is intended for public health practitioners who have minimal experience in genomics as it pertains to public health.

• Obesity and Genetics: A Public Health Perspective - (Centers for Disease Control and Prevention (CDC))  - This collection of educational resources contains information and commentary on discoveries of genetic variants, related disease outcomes, and the complex social, legal, and ethical issues surrounding genetic discoveries related to obesity.

• Public Health Biology - (Johns Hopkins Bloomberg School of Public Health)  - Online course materials for 550.630 Public Health Biology, a class which offers an integrative molecular and biological perspective on public health problems. It also explores population biology and ecological principles underlying public health and reviews molecular biology in relation to public health biology.

• Six Weeks to Genomic Awareness - (Michigan Public Health Training Center)  - An online series of presentations designed to provide public health professionals a foundation for understanding how genomics advances are relevant to public health.

• Telling Stories, Understanding Real Life Genetics - (National Genetics Education & Development Centre, UK)  - A web-based resource for health professionals that uses patient stories within a searchable education framework. Annotated stories are accompanied by video clips, expert commentaries and related activities. All stories and accompanying toolkit are downloadable as PDF files.

• Welcome to Genetics & Your Practice - (March of Dimes)  - This site is designed to assist health care professionals in integrating genetics into patient care and has been customized for those working with the following patient types: preconception/prenatal, infant/children, and adolescent/adult.

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Conferences and Meetings

• Colloquia Series on Personalized Medicine - (American Association for the Advancement of Science (AAAS))  - The colloquia addresses the scientific discoveries, business models, and regulatory changes that are necessary to develop new personalized treatments and their companion diagnostics.

• National DNA Day (April 25th) - United States

• Public Health Genomics Upcoming Events - (Centers for Disease Control and Prevention (CDC))  - List of selected upcoming genomics-related events.

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