General Information
Organizations
Government Links
Links to government websites containing information on newborn screening. (HRSA, CDC, NIH, etc)
Professional Health Care Organizations
Links to professional organizations involved in and concerned with newborn screening issues.
Consumer Organizations / Support Groups
Links to patient/consumer oriented sites focused on genetic disorders and issues.
Policies
Policy Links - Professional Organizations
Links to the newborn screening and genetics related policies of various professional organizations.
Policies and Laws - Public Health Genetics
Links to policies and laws in public health genetics.
References and Tools
Glossaries and Reference Services
Links to a variety of reference websites such as genetic glossaries, libraries, and databases.
HHS Community Health Indicators Resource
Contains health indicator data for every county in the US
Family Health Portrait
Family History Tool from the Surgeon General
GAPPNet
Genomic Applications in Practice and Prevention Network aims to accelerate and streamline effective and responsible use of validated and useful genomic knowledge and applications, such as genetic tests, technologies, and family history, into clinical and public health practice.
HRSA Resources
GENE Project:
Genetics Education Needs Evaluation (GENE) Project (2005); Five year initiative aimed at improving access to genetics information.
Literature Review:
Genetics Education and Underserved Population
GeneticTools
Genetics in Primary Care teaching cases. Each case provides learning objectives; identifies family history issues and red flags; reviews clinical care issues, risk assessment, and testing; and discusses the relevant ethical, social, legal, and cultural issues.
Genetics Literacy Project
Literature and Materials Review (2001) This working report considers how various actors, such as researchers, practitioners, journalists, etc produce and disseminate information about genetics and health.
Genetic Services Policy Project
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.
