IT'S MY DNA!
Baby DNA and Newborn Screening
...[M]ost parents are completely stunned when they find out that their child's blood is being held by the State. They have no recollection and they think it's unlawful.
Dr. Sharon Kardia, University of Michigan, September 23, 2009.
Photo from 2005 MN Department of health provider manual
One FL baby says "Help! The Gov't Has My DNA"
Newborn screening is the most widely performed type of genetic testing in the United States today. . . . Most states, including New York, do not require parental consent. . . .
Most newborn screening programs, including New York's program, store residual newborn blood samples (bloodspots) and use them for research.
"Genetic Testing and Screening in the Age of Genomic Medicine (Exec. Summary), NY Dept. of Health.
Whether you like it or not, a complete [genomic] sequencing of newborns is not far away.
Francis Collins, Director, National Institutes of Health, October 26, 2009
According to an HHS news release, the rule updates “regulations that safeguard individuals who participate in research,” but Citizens’ Council for Health Freedom (CCHF, www.cchfreedom.org), a national health freedom and patient advocacy organization, says the rule leaves the country’s youngest citizens out in the cold when it comes to patient privacy.
ST. PAUL, Minn.—Patient privacy for some of Indiana’s youngest citizens—and the fight for the protection of baby DNA nationwide—took a blow this week, as the Indiana Court of Appeals ruled against baby “A.B. Doe,” her parents and other families they were representing.
Citizens' Council for Health Freedom would like to underscore the importance of the proposed
"human subject" designation of biospecimens, including newborn DNA. We support this designation, which is currently in law for newborn dried blood spots (Newborn DNA) under the Newborn Screening Saves Lives Reauthorizaiton Act of 2014.
Your comments are critical to protect your child's and your own Privacy.
Comment by 11:59 PM EASTERN time at REGULATIONS.GOV
Click here for more information.
See CCHF's comments here.
Citizens’ Council for Health Freedom Educating Americans About ‘Common Rule’ That Would Eliminate Certain Consent Requirements and Open Patients to Being Research Subjects Without Their Full Knowledge
ST. PAUL, Minn.—Citizens’ Council for Health Freedom (CCHF, www.cchfreedom.org) is educating Americans about a proposed “Common Rule” that would undo years of work to protect baby DNA.
Citizens’ Council for Health Freedom, a national organization existing to support individual health care choices, individualized patient care, and medical and genetic privacy, is actively engaged in protecting the right of citizens to consent or to refuse to consent to the collection, storage, use and sharing of private information for research or other purposes, including biospecimens, and in particular, newborn DNA collected by state government agencies as part of the 50 state government newborn screening programs.
ST. PAUL, Minn.—As the Minnesota State Fair began last week, Citizens’ Council for Health Freedom (CCHF,www.cchfreedom.org) encouraged new and potential parents to visit the booth manned by the Minnesota Department of Health’s Newborn Screening Program and request the official state form that will allow parents to have their newborn’s blood spots and test results destroyed rather than stored by the state and used for research.
ST. PAUL, Minn.—The Minnesota State Fair, one of the largest in the country, kicks off today. But beyond the famous food-on-a-stick and other fair staples, organizations from around the state see the fair as an opportunity to introduce themselves to the throngs of visitors who will attend the fair through Labor Day.