IT'S MY DNA!
Baby DNA and Newborn Screening
Private Newborn Screening Options TAKE ACTION - Find Out How Your Baby's DNA is Being Used 50 States - How Long State Government Keeps Your Baby's DNA 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
Revised Common Rule Strips Parents of Consent Rights Regarding Baby DNA Used for Research
ST. PAUL, Minn.—As things stand, in just over two months parents will lose their consent rights for the use of their newborn baby’s DNA for federally funded research, once the revised Common Rule goes into effect on July 19, 2018.
New Parent Lawsuit Exposes Stolen ‘Baby DNA,’ Says Citizens’ Council for Health Freedom
ST. PAUL, Minn.—Citizens’ Council for Health Freedom (CCHF) is applauding a new lawsuit where a group of parents are suing the state of Michigan for “stolen blood” because the Michigan BioTrust for Health stores Baby DNA for research—without parental consent. Parents Sue Michigan for Stolen Blood (“Baby DNA”)
The Michigan BioTrust for Health is storing newborn DNA for 100 years. Philip Ellison, the father of a newborn, is an attorney whose job is to sue the government. He got nine other families together in a federal lawsuit. And he sued the state health department and the biobank. His special web page: stolenblood.com. For more on issue: itsmydna.org Hits and Misses for Health Freedom in 2017’s Top Headlines
ST. PAUL, Minn.—This past year was certainly eventful when it came to headlines that shaped the health care landscape. In fulfilling its mission to educate and engage Americans about health care policies that affect them personally, Citizens’ Council for Health Freedom (CCHF, www.cchfreedom.org) has been a voice of support or opposition, depending on the proposed statutory and regulatory revisions.
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
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?
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.org) wants 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
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
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 RuleIn 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. Take Action
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Health Privacy Alert!
HIPAA DOES NOT PROTECT PRIVACY... AND YOU ARE By federal law, you are not required to sign the clinic or hospital HIPAA "Privacy" form (or the Acknowledgement of the Notice of Privacy Practices embedded in consent forms)...even if the clinic tries to insist that you must. The form has nothing to do with...
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