PRESS RELEASES
For Immediate Release
Thursday, May 05, 2009
Response
to American
College of Medical Genetics' Newborn DNA Position Paper
Parent
consent for storage and use of
newborn DNA should be required
Minneapolis/Saint Paul – In response to the press
release and position
paper released Tuesday by the American College of Medical
Genetics—the 2007 recipient of a $4 million, five-year federal grant to
serve as the National Coordinating Center (NCC) for the Regional
Genetics and Newborn Screening Collaborative Groups—the
Citizens' Council on Health Care (CCHC) released the following
statement from CCHC's president, Twila Brase:
"The ACMG position paper on residual newborn screening dried blood
spots from every American baby erroneously claims newborn blood is a
'national resource' and fails to acknowledge that the DNA-rich blood
spots are personal genetic property, not the property of State
governments and genetic researchers.
"Newborn blood is collected for the sole purpose of newborn genetic
screening and should be promptly discarded after screening is
completed, unless the parent has given fully informed written consent
for genetic research. Thus, we disagree with the College's assertion
that newborn dried blood spots
should be readily available for other activities that
are thought to be of 'considerable additional value.'
"We also disagree with the College's assertion that newborn citizens
should automatically become research subjects for the purpose of
assessing 'the
full spectrum of a specific genetic disease...in a general population.'
"No one wants to walk into the hospital as a patient and walk
out as a research subject. If the ACMG reasoning stands, all
patients
of all ages could find the blood, tissues, and body parts they leave
behind analyzed, shared or sold without their consent.
"Many parents of newborns don't agree with the assertions in the ACMG
position paper. The University
of Michigan found 56% of parents unwilling to have their baby's blood
used for research without their consent. They also found that 67% of
those unwilling to have it used for research are also unwilling to have
it stored.
"The taxpayer-funded ACMG should reissue this position paper and
publicly acknowledge that a baby's DNA and unique genetic code is not
the property of State governments and genetic researchers. They should
publicly state
that they support fully informed written parent consent requirements
for the
collecting, storage, use and dissemination of newborn DNA."
FMI:
Twila Brase, President
651-646-8935
- CCHC -
Citizens' Council on Health Care supports
freedom for patients and doctors, medical
innovation, and the right to a confidential patient-doctor
relationship.
Citizens' Council on Health Care is a non-profit, independent health care policy organization that supports free-market ideas in health care.
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