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

 

"Genetic Information in Minnesota" - Dept of Admin Report

Not without my Permission: Parents' Willingness to Permit Use of Newborn Screening Samples for Research

Background: State newborn screening (NBS) programs are considering the storage and use of NBS blood samples for research. However, no systematic assessment of parents’ attitudes exists. Methods: We conducted an Internet-based survey of a nationally representative parent sample. We examined parents’ willingness (1) to permit use of their children’s NBS samples for research with/without their permission and (2) to allow NBS sample storage. Using bivariate and multinomial logistic regression, we examined the asso ciation of parent and child characteristics with parents’ willingness to permit NBS sample storage and use for research, respectively. Results: The response rate was 49.5%. If permission is obtained, 76.2% of parents were ‘very or somewhat willing’ to permit use of the NBS sample for research. If permission is not obtained, only 28.2% of parents were ‘very or somewhat willing’. Of parents surveyed, 78% would permit storage of their children’s NBS sample. Parents who refused NBS sample storage were also less willing to permit use of the NBS sample for research.

Attorney's Minority Report to MN Genetic Info Report

CCHC Submits Genetic Information Minority Report

In response to the “2009 Genetic Information Report – DRAFT Version Two,” this report was submitted to Commissioner Dana Badgerow, Minnesota Department of Administration by Twila Brase, RN, PHN, Member of the Minnesota Genetic Information Work Group and President of Citizens’ Council on Health Care, January 2009

 

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