IT'S MY DNA!

 

Storing and Using Newborn DNA—Without Parent Consent

 

NEWBORN SCREENING
REFUSAL / OPT-OUT FORMS 

NEWBORN SCREENING
BLOODSPOT
DESTRUCTION FORMS

California
Indiana
Iowa
Maine
Michigan
Minnesota

CLICK HERE FOR ALL STATES

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

Baby DNA in Minnesota

Protect Your Baby at the Hospital - MN "Newborn Rights" Sign to Post After Birth

Testimonials - Taking Baby DNA

"[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

 

CCHC Activities in Support of Privacy Rights, Parent Rights, and DNA Property Rights

Notes • May 20, 2008

A Critical Analysis of Proposed 'Newborn Screening Saves Lives Act of 2007'

National Reports • March 01, 2008

Genetic privacy, parent consent and individual self-determination rights are at stake with the U.S. Senate’s recent passage of S. 1858, the ‘Newborn Screening Saves Lives Act of 2007.’ This paper outlines five key issues of concern.

Private Newborn Screening Options

Issues • June 06, 2007

Because newborn genetic testing can lead to the early diagnosis and treatment of rare newborn genetic diseases, most parents will want to have their child tested. For parents who do not wish to allow state government to collect and screen their newborn's blood for these genetic disorders and traits, there are...

Protect the Genetic Privacy Rights of Newborn Babies and Families in Minnesota!

Notes • January 23, 2007

State IRB Documents Reveal Research on Baby DNA Without Consent

Notes • August 10, 2005

Why Patient Consent Should be Required for the Governor's Genetic Research Proposal

Links and Quotes • March 16, 2005

What Consent? - MN's Medical & Genetic Research Law

Policy Briefs • February 01, 2005

Minnesota state law denies most consent rights for patients regarding use of their individually-identifiable medical records for medical research. UPDATE: Until the Minnesota Genetic Privacy Act passed in 2006, Minnesota law was silent on collection, storage use and dissemination of genetic information for genetic research. States are not preempted by federal law from passing stronger, more privacy-protecting laws.

MN Health Department List of Tests Proposed for Newborn Genetic Testing for Congenital and Heritable Disorders - 2003 *

Issues • May 24, 2003

Newborn Genetic Testing - What Minnesota Parents Need to Know

Issues • May 20, 2003

Minnesota Plans to Create State Health Database

Medical Privacy • March 20, 2003

Although the proposed department RULE was withdrawn in 2003 due to public outcry, the state LAW (M.S. 62J.301 and 62J.321) was not repealed. By law, the health department can still gather private medical records data, including genetic data, without patient consent. No rule is required.