The National Institutes of Health has issued a final NIH Genomic Data Sharing (GDS) policy to promote data sharing as a way to speed the translation of data into knowledge, products and procedures that improve health while protecting the privacy of research participants.
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. (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. (Centers for Disease Control and Prevention (CDC))
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. (National Institutes of Health (NIH))
Resources about genetic linkages to nutrition and obesity, including research and funding opportunities. (National Institute of Diabetes and Digestive and Kidney Diseases, NIH (NIDDK))
(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. (National Institutes of Health (NIH))
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. (Department of Health and Human Services (HHS) U.S.)
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.
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.
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.
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.
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.
The Association of Public Health Laboratories (APHL) strengthens the role of public health laboratories in genetics testing and newborn screening science and practice.
The CSGC website includes a Survey of Nationwide Public Health Genetics Activities from 2002.
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.
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. (American Public Health Association (APHA))
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. (New York State Department of Health)
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.
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.
Provides information and resources in the area of newborn screening and genetics to benefit health professionals, the public health community, consumers and government officials.
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.
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.
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. (Association of State and Territorial Health Officials (ASTHO))
Information about genetics grant projects, clinical resources, and genetics education.
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. (Maternal and Child Health Bureau, Health Resources and Services Administration (MCHB))
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.
An integrated, searchable knowledge base of genetic associations and human genome epidemiology in the published literature.
A browsing tool allows you to compare the sequenced variations of the influenza virus genome. (National Library of Medicine (NLM) U.S.)
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.
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.
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. (National Human Genome Research Institute)
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). (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. (Centers for Disease Control and Prevention (CDC))
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. (National Institutes of Health (NIH))
Fellowship to give genetics professionals an opportunity to contribute the policy-making process. (American Society of Human Genetics (ASHG), National Human Genome Research Institute)
Provides summary information and recommendations from the New York State Task Force on Life and the Law about genetic testing. (New York State Department of Health)
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. (Association of State and Territorial Health Officials (ASTHO))
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. (Department of Health and Human Services (HHS) U.S.)
Publications from CDC's Office of Public Health Genomics (OPHG) including annual reports, books, and scientific articles. (Centers for Disease Control and Prevention (CDC))
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. (Institute of Medicine (IOM))
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.
Weekly update that provides information about the impact of human genomic research on disease prevention and population health. (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. (Centers for Disease Control and Prevention (CDC))
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. (Specialized Information Services Division)
Provides information on new developments in research, policies, and programs on the use of genomic applications to improve health and prevent disease. (Centers for Disease Control and Prevention (CDC))
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. (National Human Genome Research Institute, 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. (National Library of Medicine (NLM) U.S.)
Blog on the results of genomic research, evaluation, and programs conducted by CDC and other institutions around the world from a public health perspective. (Centers for Disease Control and Prevention (CDC))
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. (Office of the Surgeon General, HHS)
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. (National Human Genome Research Institute)
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. (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. (University of Washington)
(National Institute on Minority Health and Health Disparities, NIH (NIMHD) USA)
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. (Centers for Disease Control and Prevention (CDC))
This document cautions consumers about the marketing, sale, and use of at-home genetic tests.
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.
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. (National Center for Biotechnology Information, National Library of Medicine (NCBI))
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.
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. (Centers for Disease Control and Prevention (CDC))
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. (March of Dimes)
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. (Johns Hopkins Bloomberg School of Public Health)
An online series of presentations designed to provide public health professionals a foundation for understanding how genomics advances are relevant to public health. (Michigan Public Health Training Center)
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. (National Genetics Education & Development Centre, UK)
The colloquia addresses the scientific discoveries, business models, and regulatory changes that are necessary to develop new personalized treatments and their companion diagnostics. (American Association for the Advancement of Science (AAAS))
Events and webinars focusing on topics in health and genetics. (Genetic Alliance)
List of selected upcoming genomics-related events. (Centers for Disease Control and Prevention (CDC))
October 27-30, 2014, Anaheim, CA. The symposium will address newborn screening and genetic testing issues relevant to public health. The major learning objectives include discussing and evaluating quality assurance and effectiveness of newborn screening laboratories and the newborn screening and genetics follow-up programs; description of state and international experiences with candidate conditions and clinical outcomes; and the discussion of new technologies, information exchange and policy related to newborn screening systems efficiency. The conference will offer laboratory, nursing, CPH and genetic counseling CEUs. (Association of Public Health Laboratories (APHL) U.S.)