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

 

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

Minnesota Plans to Create State Health Database

Although the proposed department RULE was withdrawn in 2003 due to public outcry, the state LAW (M.S. 62J.301 and 62J.321) was not repealed.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.

CCHC Testifies Against Mandatory Genetic Testing of Newborns

It is particularly concerning that this major initiative has been placed within a very contentious budget bill. Having it in this bill means that it is less likely to receive the discussion it needs before passage is even considered.