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

 
 

10-PART OVERVIEW

 

Addendum to CCHF's Public Comments - "Human Subject" Designation

Addendum to CCHF's Public Comments - 'Human Subject' Designation

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.

ALERT Act before MIDNIGHT to Protect Patient Privacy

ALERT   Act before MIDNIGHT to Protect Patient Privacy

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.

 

 

Proposed Rule Would Gut Law That Protects Baby DNA

Proposed Rule Would Gut  Law That Protects Baby DNA

 

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. 


CCHF NIH Common Rule Comments Jan 4, 2016

CCHF NIH Common Rule Comments Jan 4, 2016

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.

Baby DNA in Minnesota

Parents Are Being Misled About Research at MN Fair

Parents Are Being Misled About Research at MN Fair

ST. PAUL, Minn.—As the Minnesota State Fair began last week, Citizens’ Council for Health Freedom (CCHF,www.cchfreedom.orgencouraged 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.

 

CCHF to Parents: Ask for Newborn Screening DNA Opt-Out Form at MN State Fair

CCHF to Parents: Ask for Newborn Screening DNA Opt-Out Form at MN State Fair

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.

The Daily Caller 'Leaders' Interview Segment with CCHF President Twila Brase!

The Daily Caller 'Leaders' Interview Segment with CCHF President Twila Brase!

Virginia “Ginni” Thomas, founder of Liberty Consulting and wife of Supreme Court Justice Clarence Thomas, interviews Twila Brase in the old style (longer answers) on (longer answers) on Daily Caller about Obamacare, Medicare, building a “Wedge of Freedom,” Baby DNA warehousing and the power of privacy to protect health freedom.

Whose DNA Is It, Anyway?

Whose DNA Is It, Anyway?

Last year, CCHF was instrumental in advocating a parental consent requirement as part of the Newborn Screening Saves Lives Reauthorization Act of 2014, which passed both houses of Congress and was signed into law on December 18.

“CCHF has long fought for the inclusion of informed consent requirements before newborn bloodspots can be stored and used for research,” Brase said, as she prepared to depart for the nation’s capital...

Minnesota Department of Health Tries to Shut Down CCHF’s Informative Mailings to Parents About Use and Storage of Baby DNA

Minnesota Department of Health Tries to Shut Down CCHF’s Informative Mailings to Parents About Use and Storage of Baby DNA

ST. PAUL, Minn.—For more than a century, the contact information from state registration of births has been public in the state of Minnesota. And that information is how Citizens’ Council for Health Freedom (CCHF,www.cchfreedom.org), a Minnesota-based national organization dedicated to preserving patient-centered health care and protecting patient and privacy rights, recently sent nearly 10,000 letters to parents of newborns, letting them know that the state of Minnesota is storing and can use their baby’s DNA for genetic research without consent.