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

 

CCHC Opposes Baby DNA Banking in Comments on HHS Proposal

According to Recommendations from HHS, the newborn DNA of children is a valuable resource that should be banked by government and made available to researchers without parent consent. Citizens' Council on Health Care has responded in opposition by sending public comments to HHS.

CCHC Opposes HHS' Lack of Consent for State Retention of Baby DNA

CCHF responds to HHS Request for Public Comments on “Considerations and Recommendations for National Guidance Regarding the Retention and Use of Residual Dried Blood Spot Specimens after Newborn Screening,” – a Briefing Paper issued April 26, 2010 by HHS through the Secretary’s Advisory Committee on Heritable Disorders in Newborns and Children.

Key Information

Federal Register notice, April 26, 2010

The Secretary’s Advisory Committee on Heritable Disorders in Newborns and Children (SACHDNC) was established under Section 1111 of the Public Health Service (PHS) Act, 42 U.S.C. 300b–10, as amended in the Newborn Screening Saves Lives Act of 2008 (Act). The SACHDNC is governed by the provisions of the Federal Advisory Committee Act (FACA), as amended (5 U.S.C. App.), which sets forth standards for the formation and use of advisory committees. The SACHDNC provides advice to the Secretary about aspects of newborn and childhood screening and technical information for the development of policies and priorities that will enhance the ability of the State and local health agencies to provide for newborn and child screening, counseling and health care services for newborns and children having or at risk for heritable disorders.

HHS Recommends Government Banking of Newborn DNA without Consent

This document is designed to review the issues facing state newborn screening programs related to the retention and use of residual newborn screening specimens. It will lay the foundation for developing national guidance to states in this area, and encourage an approach to future policymaking that enables residual specimens use to advance science and clinical care for newborns, children and their families. The core principles of protecting patient privacy, confidentiality and ensuring public trust are at the core of these recommendations.

CCHC Opposes Lack of Consent Requirements for Storing Baby DNA - Public Comments to HHS

HHS Request for Public Comments on “Considerations and Recommendations for National Guidance Regarding the Retention and Use of Residual Dried Blood Spot Specimens after Newborn Screening,” – a Briefing Paper issued April 26, 2010 by HHS through the Secretary’s Advisory Committee on Heritable Disorders in Newborns and Children.

Newborn DNA Sent to U.S. Military for Law Enforcement Database without Parent Consent

Texas began storing newborn DNA, collected for the newborn screening program, in 2002 without parent consent. A recent lawsuit against the State was settled, forcing Texas officials to destroy the 5.3 million infant blood spots in storage.

How Long State Government Keeps Your Baby's DNA

Texas Department of Health to destroy newborn bloodspots to settle parent lawsuit

The Texas Department of Health should never have stored or analyzed the DNA and unique genetic codes of its newborn citizens. It is only right that they destroy the genetic information that they have stored and given to researchers without legal authority or the consent of parents.

Judge's Ruling Supports Government Violation of Minnesota Genetic Privacy Law

The judge's arguments against the nine families are extremely weak. There is no law on the books in Minnesota to support the health department's current practice of indefinite storage, use and sharing of newborn DNA for research without parent consent. The law that is on the books, the Minnesota genetic privacy law, forbids it.