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Genetic privacy, parent consent and individual self-determination rights are at
stake with the U.S. Senate’s recent passage of S. 1858, the ‘Newborn Screening
Saves Lives Act of 2007.’ This paper outlines five key issues of concern.
Overview
If enacted, S.1858 will nationalize the
genetic testing of all newborn children—and
indirectly their families. The bill and its U.S.
House companion bill, H.R. 3825, will:
• Establish a national list of genetic
conditions for which newborns and
children are to be tested.
• Establish protocols for the linking
and sharing of genetic test results
nationwide.
• Build surveillance systems for
tracking the health status and health
outcomes of individuals diagnosed
at birth with a genetic defect or trait.
• Use the newborn screening program
as an opportunity for government
agencies to identify, list, and study
“secondary conditions” of
individuals and their families.
• Subject citizens to genetic research
without their knowledge or consent.
Newborn screening is “the first program of
populationwide genetic testing.”1 Yet this
legislation does not require informed parent
consent for testing, surveillance, or research.
Babies are newborn citizens. Each one of the
4,000,000 children born each year in the
United States has all the constitutional rights
of fully-grown citizens. Eventually, these
children become voting adults.
The U.S. Senate passed S. 1858 on
December 13, 2007. An anonymous—said
to be unanimous—voice vote was taken.
The Senate bill awaits action in the U.S.
House, along with the House bill, H.R.
3825. (CCHC Appendix A and B) This analysis
examines H.R. 3825 IH (as Introduced in the
House), the House version of the Senate bill.
stake with the U.S. Senate’s recent passage of S. 1858, the ‘Newborn Screening
Saves Lives Act of 2007.’ This paper outlines five key issues of concern.
Overview
If enacted, S.1858 will nationalize the
genetic testing of all newborn children—and
indirectly their families. The bill and its U.S.
House companion bill, H.R. 3825, will:
• Establish a national list of genetic
conditions for which newborns and
children are to be tested.
• Establish protocols for the linking
and sharing of genetic test results
nationwide.
• Build surveillance systems for
tracking the health status and health
outcomes of individuals diagnosed
at birth with a genetic defect or trait.
• Use the newborn screening program
as an opportunity for government
agencies to identify, list, and study
“secondary conditions” of
individuals and their families.
• Subject citizens to genetic research
without their knowledge or consent.
Newborn screening is “the first program of
populationwide genetic testing.”1 Yet this
legislation does not require informed parent
consent for testing, surveillance, or research.
Babies are newborn citizens. Each one of the
4,000,000 children born each year in the
United States has all the constitutional rights
of fully-grown citizens. Eventually, these
children become voting adults.
The U.S. Senate passed S. 1858 on
December 13, 2007. An anonymous—said
to be unanimous—voice vote was taken.
The Senate bill awaits action in the U.S.
House, along with the House bill, H.R.
3825. (CCHC Appendix A and B) This analysis
examines H.R. 3825 IH (as Introduced in the
House), the House version of the Senate bill.
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