Warehousing Baby
DNA
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...
Parents Shocked
The public is adamantly in disagreement with storage and research
of baby DNA without parent consent.
One University of
Michigan study by Beth Tarini, Aaron Goldenberg and others ("Not
Without My Permission")...
Risk, Refusal, & Backlash
Around the country, some parents who know about the government's
baby DNA collection, are avoiding the
newborn genetic testing program
altogether to keep government from taking and claiming ownership to
their child's DNA. They weigh the risk and the rarity and decide not to
participate..."
Minnesota Parents Opt-Out
In Minnesota, where parents have the legal right to opt out
of
newborn genetic testing or allow the testing to be done and then
require the destruction of the blood spots and the genetic test
results, the
numbers of parents opting
out of one or the other have risen every year...
Research Using Baby DNA
State Health Departments conduct research and share newborn DNA to
private and government researchers. In 2002, federal officials met in
North Carolina to discuss the creation of a centralized national
biobank of newborn dried blood spots...
Research Without Consent
The potential for violation of individual rights is huge in the
issue of storage and use of newborn DNA. At stake are human rights,
Fourth Amendment rights, privacy rights, parent rights, property
rights, human subject rights and patient rights...
Baby DNA Lawsuits
As members of the American public have become increasingly aware of
these state-based Baby DNA warehouses, lawsuits against state
departments of health have emerged in Minnesota and in Texas. In
Minnesota, nine families...
Parents are not required by law to initial the four items on this form.
