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/

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/screeninginformation.php

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/html/resources/info_cntr.html

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

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/humansubjects/guidance/ictips.htm

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.faseb.org/genetics/ashg/policy/pol-25.htm

The Office of Human Subjects Research (OHSR) at the National Institutes of Health (NIH) information sheet detailing guidelines for writing informed consent.
http://ohsr.od.nih.gov/info/sheet6.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).
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.faseb.org/genetics/acmg/pol-17.htm

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 Pediatrics of the Royal Australasian College of Physicians.
http://www.hgsa.com.au

Pediatrics article detailing the practices of the country’s newborn screening programs including storage of samples.
http://pediatrics.aappublications.org/cgi/content/full/109/2/269

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

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

A press release from the Save Babies Through Screening Foundation about newborn screening for untreatable disorders.
http://www.savebabies.org/pressreleases/release1-20-02.php

This article discusses the ethical and social ramifications of genetic disorders.
http://www.usd.edu/med/som/genetics/curriculum/3DETHIC4.htm

State differences

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/nbsdisorders.pdf

A discussion of newborn screening from the National Conference of State Legislatures.
http://www.hgsa.com.au/policy/d_psrsuscnsp.html

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.ornl.gov/TechResources/Human_Genome/elsi/legislat.html#I

A listing of regulations, statutes, and laws related to Genetics and biotechnology.
http://www.megalaw.com/top/biotech.php

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

Cost Benefit

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://www.aap.org/policy/01565.html

Insurance coverage

An argument supporting insurance coverage of PKU patients.
http://www.circ.uab.edu/sergg/current/win96-3.htm

An article arguing for insurance coverage of PKU patients.
http://www.genesage.com/professionals/geneletter/archives/pkudiet.html

Educational Resources

News article describing an American Academy of Pediatrics (AAP) study about the lack of adequate newborn screening educational materials.
http://www.healthfinder.gov/news/newsstory.asp?docID=525442

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/580_9611.asp

March of Dimes’ resource page for parent education about newborn screening.
http://www.marchofdimes.com/professionals/580_9610.asp