IT'S MY DNA!

 

Storing and Using Newborn DNA—Without Parent Consent

"[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 Florida 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 - Newborn Genetic Screening, Baby DNA Warehousing Government Research & No Parent Consent

 

NewParents Win In Lawsuit Against Michigan Over Stolen Blood From Newborn Babies; No Consent Means It’s Unconstitutional

ST. PAUL, Minn. — In a landmark case, a Michigan law firm, Outside Legal Counselhas successfully sued the Michigan Department of Health and Human Services. In a major win for the rights of parents and against the government’s long-term storage of a child’s DNA, the court ruled that the state’s unconsented storage and research are unconstitutional

Protect Newborn Genetic Privacy Rights

Protect Newborn Genetic Privacy Rights

Parents are permitted to refuse newborn genetic screening or to choose private newborn genetic screening. Notwithstanding any other state or federal law or regulation, prior to conducting newborn genetic screening, a health care facility or health care provider must receive the express, separate, written, voluntary, informed consent of the parents or guardian of a newborn child. A general consent permitting treatment signed by the parents or guardian at admission to a facility does not fulfill this requirement. This consent requirement cannot be waived for any reason.

Contact Congress About 3 Critical Health Care Issues While They Are Home for Recess

Contact Congress About 3 Critical Health Care Issues While They Are Home for Recess

ST. PAUL, Minn.—Even though Congress could be called back from the August recess to address gun measures after the devastating shootings in El Paso and Dayton, Citizens’ Council for Health Freedom (CCHF) is urging state residents to contact their U.S. Senators and Representatives about three important health care issues.

5 Years Since MN Resumed Storing Baby DNA After Lawsuit Forced Them to Stop

5 Years Since MN Resumed Storing Baby DNA After Lawsuit Forced Them to Stop

ST. PAUL, Minn.—More than 15 years ago, Citizens’ Council for Health Freedom (CCHF, www.cchfreedom.orgdiscovered that the Minnesota Department of Health was storing and using Baby DNA—the genetic blueprints of its youngest citizens obtained through newborn screenings—without parental consent. 

CCHF Applauds Court Ruling on Retention of Newborn DNA in MI

CCHF Applauds Court Ruling on Retention of Newborn DNA in MI

ST. PAUL, Minn.— Citizens’ Council for Health Freedom (CCHF, www.cchfreedom.org), the organization that discovered state storage of newborn DNA in Minnesota in 2003, called on Minnesota’s governor to destroy stored newborn DNA in July 2007 and pulled Minnesota parents together in March, 2009 for the first lawsuit filed in the nation, applauds yesterday’s federal appeals court ruling on retention and use of newborn DNA in Michigan.  

Parents, Did You Know?

Parents, Did You Know?

ST. PAUL, Minn.—In a world dominated by technology, surveillance and privacy concerns, there is very little that still truly belongs to human beings. 

Their DNA should be one of these closely guarded possessions. 

Baby DNA Will No Longer be Protected by Previously Enacted Consent Requirements

Baby DNA Will No Longer be Protected by Previously Enacted Consent Requirements

ST. PAUL, Minn.—The Office for Human Research Protections at the U.S. Department of Health and Human Services today used a Frequently Asked Questions (FAQ) to issue a notice on federally funded research using newborn dried blood spots taken by states for genetic testing at birth.

Parents and Newborns Harmed by Unconsented State Storage of Baby DNA

Parents and Newborns Harmed by Unconsented State Storage of Baby DNA

ST. PAUL, Minn.—Three important court cases involving Baby DNA are in progress in Michigan, and while one has suffered a setback, litigators and parents are pressing forward to ensure that their children’s genetic blueprint, and the genetic code of other newborn babies, is protected and kept private. 

Judge Rules Against Parents in Baby DNA Case

Judge Rules Against Parents in Baby DNA Case

ST. PAUL, Minn.Citizens’ Council for Health Freedom (CCHF) is responding after a District Court ruled in favor of the defense on a motion to dismiss a case involving Baby DNA in Michigan. Read the Aug. 8 Adam Kanuszewski, et. al. v. Michigan Department of Health and Human Services, et. al. decision here.

US District Court Dismisses Michigan Baby DNA Case

US District Court Dismisses Michigan Baby DNA Case

Read the ruling to dismiss the Michigan Baby DNA lawsuit issued by the federal district court on August 8, 2018. The case will be appealed.