CCHF Makes Waves on Capitol Hill

HEALTH FREEDOM WATCH
Volume 26: Issue 3: 3rd Quarter 2023
IT'S MY DNA!
Storing and Using Newborn DNA—Without Parent Consent
NEWBORN SCREENING
REFUSAL / OPT-OUT FORMS
NEWBORN SCREENING
California
NEWBORN SCREENING ADDITIONAL INFORMATION LINKS
Private Newborn Screening Options TAKE ACTION - Find Out How Your Baby's DNA is Being Used 50 State CHART - How Long State Government Keeps Your Baby's DNA (2001 to present) 50 States & DC - Newborn Screening Laws CCHF Reports on Newborn Screening Nationwide Protect Your Baby at the Hospital - MN "Newborn Rights" Sign to Post After Birth "[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
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
CCHF STATEMENT RE: CBS Story on Newborn DNA Privacy![]() ST. PAUL, Minn. — Reacting to today’s CBS new story on the privacy of newborn dried blood spots stored after newborn genetic screening, Citizens’ Council for Health Freedom releases the following statement from Twila Brase, CCHF’s president and co-founder: “Newborn blood spots, the DNA of America’s children, have been called a 'national treasure,' but this treasure should never become the property of the state as it is in many states today..."
Baby DNA Retention List 2021A state-by-state listing of how long the government will keep and store your child's DNA, following the newborn genetic screenings typically performed immediately after birth.
Parents Win In Lawsuit Against Michigan Over Stolen Blood From Newborn Babies; No Consent Means It’s UnconstitutionalST. PAUL, Minn. — In a landmark case, a Michigan law firm, Outside Legal Counsel, has 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![]() 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![]() 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![]() ST. PAUL, Minn.—More than 15 years ago, Citizens’ Council for Health Freedom (CCHF, www.cchfreedom.org) discovered 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![]() 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?![]() 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![]() 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. |