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After the newborn genetic testing is complete, all
State health
departments
save and store the residual dried blood spots, some for only 3
months, some indefinitely. At least ten States
store newborn dried blood spots indefinitely (CA, FL, IA, ME, MD, MI,
MN, NC, ND, VT). Another seven store them for more than 18 years (MA,
WA, IN, NJ, RI, TX, NY). The 2008 Newborn Screening Saves Lives Act may
encourage all states to hold on to baby DNA long-term.
Parents are also not told about the storage of their baby's blood
spots (DNA). Ten years ago, according to a National
Bioethics Advisory Committee report, 13.5 million blood spots
were stored nationwide. Aaron Goldenberg, Ph.D, MPH, from Case Western
Reserve University,
presenting at a
newborn screening forum ("Envisioning
the Future of Newborn Screening" December 7-8, 2009 conference),
said it is
known that
this number was a "pretty big underestimate."
This nationwide collection of newborn DNA has been called a "national
treasure" by Sharon Terry of the Genetic Alliance and referred to
at the December 2009 forum
as a "scientific goldmine" by Amy Gaviglio, a genetic counselor at the
Minnesota
Department of Health.
Increasingly, state health departments have begun to store newborn
blood spots (Baby DNA) and
newborn genetic test results and claim them as state government
property. The test results
are placed in a state laboratory database (genetic registry) and the
blood spots are warehoused in the state health department or elsewhere
by contract. For instance, the 4.2 million
blood spots of Texas newborns were being stored at Texas A&M.
In
Minnesota, there are more than 1.5 million children listed with their
genetic test results in the state's database. There are over 900,000
Minnesota children whose DNA
is warehoused by the State with at least 70,000 children added per
year.
The primary purpose for long-term storage of baby DNA and newborn
genetic test results is research.
Most research is conducted
without the knowledge or consent of the baby's parents. However,
parents are now beginning to discover this research. As a result of
this discovery and several 2009 lawsuits, researchers have begun to
study the public's response to government
storage and use of newborn DNA
without parent consent.
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