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

 

CCHF Letter to Pres. Trump & Sec. Price regarding the Newborn Screening Common Rule

In December 2014, President Obama signed the Newborn Screening Saves Lives Reauthorization Act in December 2014. It included the language we worked on with Senator Rand Paul and the Senate Steering Committee. It required parent consent for the use of newborn DNA (collected for newborn screening and stored without consent by many states) for federally-funded research.

Which States Are the Worst Offenders for Storing Baby DNA?

Which States Are the Worst Offenders for Storing Baby DNA?

ST. PAUL, Minn.—Parents want to keep their children safe, and that may mean having their newborn baby tested for genetic disorders at the time of birth. But another important aspect of parenting is keeping the genetic information of newborn babies private and protected. 

 

Moms, Do You Know Where Your Baby’s DNA Goes?

Moms, Do You Know Where Your Baby’s DNA Goes?

ST. PAUL, Minn.—With Mother’s Day just around the corner, every mom remembers the day her baby was born as a time of joy, emotion and, at moments, feelings of stress and being overwhelmed. But one thing most mothers might not think about in those first few days as a new parent is how their newborn baby’s DNA is collected, stored and used for research. 

 

Congress Has Two Weeks to Protect Newborn Privacy Rights and Restore Parental Consent

Congress Has Two Weeks to Protect Newborn Privacy Rights and Restore Parental Consent

ST. PAUL, Minn.—For years, one of the central issues for Citizens’ Council for Health Freedom (CCHF, www.cchfreedom.org), a national health freedom and patient advocacy organization, has been the protection of Baby DNA

 

Government ‘Common Rule’ for Research Strips Nation’s Newborn Citizens of Privacy Protections

Government ‘Common Rule’ for Research Strips Nation’s Newborn Citizens of Privacy Protections

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. 

 

Indiana Court Ruling Strikes a Blow Against the Protection of Baby DNA

Indiana Court Ruling Strikes a Blow Against the Protection of Baby DNA
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.

AB Doe V Indiana State Health Commissioner - Court of Appeals

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.