Links
FINANCIAL, ETHICAL, LEGAL AND SOCIAL ISSUE LINKS
General Resources
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 #: 1H46 MC 00189-03).
http://www.hrsa.gov/
A website developed by the Genetic Alliance with information about newborn screening.
http://www.babysfirsttest.org/
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.
http://www.geneticalliance.org/
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.
http://www.marchofdimes.com/
The Genetic and Rare Diseases Information Center employs experienced information specialists to answer in English or Spanish questions from the general public, including patients and their families, health care professionals and biomedical researchers.
http://rarediseases.info.nih.gov/
Genetests provides reviews of select genetic disorders including those conditions often included in newborn screening. It also contains contact information for clinical and research genetics laboratories located worldwide.
http://www.genetests.org
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.
http://www.nlm.nih.gov/medlineplus/geneticdisorders.html
The President’s Council on Bioethics’ document on the changing moral focus of newborn screening.
http://bioethics.georgetown.edu/pcbe/reports/newborn_screening/
This website gives a general overview of the different aspects of newborn screening.
http://kidshealth.org/parent/system/medical/newborn_screening_tests.html
ETHICAL AND SOCIAL ISSUES
The National Human Genome Research Institute’s website on the Ethical, Legal, and Social Issues Program.
http://www.genome.gov/page.cfm?pageID=10002329
Discrimination
The National Human Genome Research Institute’s website page on genetic discrimination in health insurance.
http://www.genome.gov/page.cfm?pageID=10002328
The National Human Genome Research Institute’s website page on Genetic Information and the Workplace.
http://www.genome.gov/10001732
Informed Consent
Description of what an informed consent document should consist of from the Office for Human Research Protections.
http://www.hhs.gov/ohrp/regulations-and-policy/guidance/informed-consent/index.html
A discussion of informed consent in medicine from the University of Washington School of Medicine.
http://depts.washington.edu/bioethx/topics/consent.html
The American Academy of Pediatrics policy statements on informed consent, parental permission and assent in pediatric practice.
http://www.cirp.org/library/ethics/AAP/
The American Society of Human Genetics statement of informed consent in genetic research.
http://www.ashg.org/pdf/policy/ASHG_PS_August1996.pdf
The Office for Human Research Protection information sheet on informed consent
http://www.hhs.gov/ohrp/policy/ictips.html
The National Library of Medicine’s information on informed consent.
http://www.nlm.nih.gov/services/ctconsent.html
Storage of samples
A discussion of the storage of newborn screening samples from the Children’s Hospital of Westmead (Australia).
www.schn.health.nsw.gov.au/health-professionals/statewide-laboratory-services/nsw-newborn-screening-programme/sample-storage?
The American College of Medical Genetics statement on storage of samples (not specific to newborn screening).
http://www.acmg.net/StaticContent/StaticPages/Storage.pdf
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.
http://www.hgsa.org.au/documents/item/32
Pediatrics article detailing the practices of the country’s newborn screening programs including storage of samples.
http://pediatrics.aappublications.org/content/109/2/269.abstract
A discussion of several ethical issues associated with newborn screening including storage of samples from the University of Montreal.
https://papyrus.bib.umontreal.ca/xmlui/handle/1866/2273
Non-treatable disorders
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.
http://www.who.int/genomics/publications/en/ethical_issuesin_medgenetics%20report.pdf
State differences
Babies 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.
http://www.babysfirsttest.org/
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.
https://www.newsteps.org/
LEGAL ISSUES
The Genome Statute and Legislation Database website has information about state statutes and bills that have been introduced between 2007-2014. The database is searchable by different topics.
http://www.genome.gov/PolicyEthics/LegDatabase/pubsearch.cfm
FINANCIAL ISSUES
Information for parents and providers on coverage for newborns screening and other life events under the Affordable Care Act.
http://www.westernstatesgenetics.org/ACA_home.htm
The National Human Genome Research Institute’s Ethical, Legal, and Social Issues Program.
http://www.genome.gov/page.cfm?pageID=10002329
Cost Benefit
Reports and information pertaining to the cost of newborn screening, and the cost benefits of screening
http://genes-r-us.uthscsa.edu/resources/newborn/costbenefit.htm
Results from the Fatty Acid Oxidation Disorder Communication Networks survey on cost-benefit in newborn screening.
http://fodsupport.org/pdf/cost_benefit_survey.pdf
The American Academy of Pediatrics policy statement on newborn screening which discusses cost.
http://pediatrics.aappublications.org/content/121/1/192.full
EDUCATIONAL RESOURCES
News article describing an American Academy of Pediatrics (AAP) study about the lack of adequate newborn screening educational materials.
The abstract from the AAP about their study which shows that parent newborn screening educational materials do not meet AAP standards.
http://pediatrics.aappublications.org/cgi/content/abstract/115/5/1268
March of Dimes’ resource page for professional education about newborn screening.
http://www.marchofdimes.com/professionals/24279.asp
March of Dimes’ resource page for parent education about newborn screening.
http://www.marchofdimes.com/baby/bringinghome_recommendedtests.html