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 Urges OMB to Include Parental Consent for Storage and Research of Baby DNA in Final Common Rule

CCHF Urges OMB to Include Parental Consent for Storage and Research of Baby DNA in Final Common Rule

ST. PAUL, Minn.Citizens’ Council for Health Freedom (CCHF, www.cchfreedom.org) has been working diligently to ensure that protections for Baby DNA, the genetic blueprint of America’s youngest residents, is protected in the final version of the “Federal Policy for the Protection of Human Subjects,” known as the Common Rule.

Letter to OMB Director Mulvaney regarding Common Rule

Letter to OMB Director Mulvaney regarding Common Rule

Our organization discovered state-based “Baby DNA Warehousing” in 2003 -- and the use and sharing of newborn DNA for medical and genetic research without parental consent. As a result, four parent lawsuits (IN, MN, TX) have been filed and judges have required millions of newborn DNA blood spot cards stored by state government to be incinerated. 

What Will Happen to Parental Consent and Privacy Rights Once Federal ‘Common Rule’ Hits its Original Deadline in Jan. 2018?

What Will Happen to Parental Consent and Privacy Rights Once  Federal ‘Common Rule’ Hits its Original Deadline in Jan. 2018?

ST. PAUL, Minn.—September is Newborn Screening Awareness Month, which educates parents about tests that help diagnose diseases and disorders early in their baby’s life. But during this awareness month, Citizens’ Council for Health Freedom (CCHF, www.cchfreedom.orgwants to inform Americans about how the federal ‘Common Rule’ actually strips parents and the nation’s youngest citizens of their rights.

Iceland on Way to Eugenics with Eradication of Down Syndrome Births

Iceland on Way to Eugenics with Eradication of Down Syndrome Births

ST. PAUL, Minn.—The nation of Iceland is working to eradicate Down syndrome births by making sure expectant mothers know about government pre-natal testing that would show if their baby has the genetic disorder.

Trump’s Actions on Common Rule Will Protect Baby DNA and Restore Parental Rights

Trump’s Actions on Common Rule Will Protect Baby DNA and Restore Parental Rights

ST. PAUL, Minn.Citizens’ Council for Health Freedom (CCHF, www.cchfreedom.org) has been communicating with President Donald Trump through letters about important health care matters and his power to advance health freedom for all Americans.

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.