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."
Twila Brase, President. Citizen’s Council on Health Care