Financial, Ethical, Legal And Social Issue Links
General ResourcesThe 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/
The National Newborn Screening and Genetics Resource Center (NNSGRC)
provides information about newborn screening including national and state
information.
http://genes-r-us.uthscsa.edu/
The Save Babies Through Screening Foundation provides parent advocacy
and general information about expanded newborn screening.
http://www.savebabies.org
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.
http://www.familyvoices.org/
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/
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
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
Description of what an informed consent document should consist of from
the Office for Human Research Protections.
http://www.hhs.gov/ohrp/policy/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
A discussion of the storage of newborn screening samples from the Children's
Hospital of Westmead (Australia).
http://www.chw.edu.au/prof/services/newborn/factsheets/storage.htm
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.com.au/images/UserFiles/Attachments/PolicyStatementontheRetentionofsampleCardsfromNewbornScreeningPrograms.pdf
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.
http://www.humgen.umontreal.ca/int/GE/en/2004-3.pdf
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
This website talks about the differences in state newborn screening programs
but also the common denominators each state program should have.
http://kidshealth.org/parent/system/medical/newborn_screening_tests.html
Legal Issues
Tables with specific state-by-state information on what each newborn
screening program includes.
http://genes-r-us.uthscsa.edu/sites/genes-r-us/files/nbsdisorders.pdf
A guidance paper from the National Newborn Screening and Genetics Resource
Center (paper can be accessed by clicking on link on the left side of
the webpage).
http://genes-r-us.uthscsa.edu/
Information on the National Human Genome Research Institute’s Policy
and Legislation Database.
http://www.genome.gov/PolicyEthics/LegDatabase/pubsearch.cfm
Information on existing national genetics legislation and bills that
have been introduced to Congress.
http://www.ncsl.org/issues-research/health/genetics-legislation-database.aspx
The National Conference of State Legislatures (NCSL)’s searchable
database of genetics legislation for 2004 and 2005.
http://www.ncsl.org/programs/health/genetics/geneticsDB.cfm
Financial Issues
The National Human Genome Research Institute’s Ethical, Legal,
and Social Issues Program.
http://www.genome.gov/page.cfm?pageID=10002329
Policy statement from the March of Dimes discussing the costs and financing
of Newborn Screening Programs
http://www.marchofdimes.com/files/Final_PWC_NBS_Report2.pdf
Results from the Fatty Acid Oxidation Disorder Communication Networks
survey on cost-benefit in newborn screening (This PDF document can be
downloaded by clicking on link on the right side of this page).
http://www.fodsupport.org/advocates.htm
Results from the Organic Acidemia Association survey on cost-benefit
in newborn screening (available on the National Newborn Screening and
Genetics Resource Center).
http://genes-r-us.uthscsa.edu/resources/newborn/costbenefit.htm
The American Academy of Pediatrics policy statement on newborn screening
which discusses cost.
http://aappolicy.aappublications.org/
Information about lobbying for state legislation regarding insurance coverage.
http://www.pkunews.org/rights/lobby1.htm
Educational Resources
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
A website developed by the Genetic Alliance with information about newborn screening.
www.babysfirsttest.org