The Health Resources and Services Administration (HRSA) is an agency under the Department of Health and Human Services Administration. HRSA provides national leadership, program resources and services needed to improve access to culturally competent, quality health care. This project is supported by a grant from the Genetic Services Branch of HRSA (MCH Project #: UH7MC307740101).
A website developed by the Genetic Alliance with information about newborn screening can be found here.
The Save Babies Through Screening Foundation provides parent advocacy and general information about expanded newborn screening.
The Genetic Alliance’s website includes information about parent support groups, genetics resources, a disease infosearch, and genetics feature articles. Information is also available in Spanish.
The Family Voices website includes resources and program information for families of children with special health needs.
The March of Dimes is an organization that supports resources to have healthy babies. The site includes a news section, a newsletter archive, and feature articles on topics such as pregnancy and premature birth.
The Genetic and Rare Diseases Information Center employs experienced information specialists to answer English or Spanish questions from the general public, including patients and their families, health care professionals, and biomedical researchers.
Medline Plus contains a glossary of genetic disorders, a news section, newsletters/print publications, clinical trials, and research, as well as separate sections for children, teenagers, and women.
The President’s Council on Bioethics‘ document on the changing moral focus of newborn screening.
This KidsHealth website gives a general overview of the different aspects of newborn screening.
ETHICAL AND SOCIAL ISSUES
The National Human Genome Research Institute’s website on the Ethical, Legal, and Social Issues Program.
The National Human Genome Research Institute’s website page on genetic discrimination in health insurance.
The National Human Genome Research Institute’s website page on Genetic Information and the Workplace.
Description of what an informed consent document should consist of from the Office for Human Research Protections.
A discussion of informed consent in medicine from the University of Washington School of Medicine.
The American Academy of Pediatrics policy statements on informed consent, parental permission, and assent in pediatric practice.
The American Society of Human Genetics statement on informed consent for genetic research.
The Office for Human Research Protections information sheet on informed consent.
The National Library of Medicine’s Medline Plus information on informed consent
Storage of samples
The American College of Medical Genetics statement on storage and use of genetic materials (not specific to newborn screening).
Policy Statement on the retention, storage and use of sample cards from newborn screening programs developed by a joint subcommittee of the Human Genetics Society of Australasia and the Division of Paediatrics of the Royal Australasian College of Physicians.
American Academy of Pediatrics article detailing the practices of the country’s newborn screening programs including storage of samples.
A 110 page report reviewing ethical issues in medical genetics presented to the World Health Organization (WHO). Pages 39-41 deal with newborn screening for untreatable disorders.
Baby’s First Test is a national newborn screening clearinghouse. This clearinghouse provides educational and family resources at the local, state, and national levels. Information about each state’s newborn screening program is available through this website.
The Newborn Screening Technical Assistance and Evaluation Program (NewSTEPs) is a national newborn screening program that provides data, technical assistance, and training to newborn screening programs across the country. The website also has a state profile for each state’s newborn screening program.
The Genome Statute and Legislation Database website has information about state statutes and bills that have been introduced between 2007-2020. The database is searchable by different topics. FINANCIAL ISSUES
The National Human Genome Research Institute’s Ethical, Legal, and Social Issues Program.
The American Academy of Pediatrics policy statement on newborn screening which discusses cost.EDUCATIONAL RESOURCES
The abstract from the AAP about their study which shows that parent newborn screening educational materials do not meet AAP standards.
Health Resources & Services Administration’s (HRSA) resource page for professional education about newborn screening.
March of Dimes’ resource page for parent education about newborn screening.