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

 

The Untold PKU Story Challenges Newborn Screening Mandate

Newborn screening advocates often refer to the newborn PKU (phenylketonuria) test as evidence of the benefit of screening—and as a rationale for compulsory testing of newborns nationwide. However, a brief look into the history of PKU testing challenges these assertions. Inaccurate test results, harmed children, untested treatments, and an increase in mental retardation mark the untold PKU story.

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

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

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

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!

State IRB Documents Reveal Research on Baby DNA Without Consent

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

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

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 *

Newborn Genetic Testing - What Minnesota Parents Need to Know