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Public Health Genomics
Federal
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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.
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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.
International
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Public Health Genomics European Network (PHGEN) – Funded by European Commission
- The PHGEN initiative ending in 2009 served the European Commission as an ‘early detection unit' for horizon scanning, fact finding, and monitoring of the integration of genome-based knowledge into public health. The next exploration will be at Maastricht University and be called the European Centre for Public Health Genomics (ECPHG).
Professional and Research and Advocacy
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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.
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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.
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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.
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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.
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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.
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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.
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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.
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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.
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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.
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Society for Genomics, Policy and Population Health
- An independent association of those with a professional interest in population and policy implications of genetics and science. It was formally established at an inaugural meeting in October 2006 and is based in Cambridge, UK.
State and Local
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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.
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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.
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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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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.
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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.
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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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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.
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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.
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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.
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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.
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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
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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.
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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.
Competencies
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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.
Genetic Testing
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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.
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GeneTests
- (National Institutes of Health (NIH))
- GeneTests (aka Gene Reviews) is a publicly funded, freely available medical genetics information resource developed with information about genetic conditions and genetic testing for physicians, other healthcare providers, researchers, and consumers.
Online Learning
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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.
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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.
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Public Health Biology
- (Johns Hopkins School of Public Health (JHSPH))
- 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.
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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.
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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.
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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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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.
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Genomics and Health Weekly Update
- (Centers for Disease Control and Prevention (CDC))
- Links to conference websites in the Upcoming Events sidebar in the weekly update, which is available online or via email.
Upcoming Meetings
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The Value of Genetic and Genomic Technologies Workshop
- (Institute of Medicine (IOM))
- March 22, 2010, Irvine, CA. Public workshop to examine the perceived value of genetic and genomic technologies, both present and future, in clinical practice from different stakeholder perspectives.
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