MN Supreme Court Ruling - Bearder, et al. vs. State of Minnesota

Baby DNA Court Ruling Disregards Constitutional Rights

Yesterday, the Minnesota Court of Appeals ruled to affirm the lower court's dismissal of the 9-parent lawsuit against the Minnesota Department of Health (MDH). The parents had challenged the collection, retention, use, and dissemination of newborn DNA by MDH as unconstitutional and in violation of the Minnesota Genetic Privacy Act.

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