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Baby DNA Appeal Decision 2010

Because the testing of newborn blood is authorized by the newborn screening statute for public-health reasons, a party whose blood was collected, retained, used, or disseminated in accordance with that statute may not assert a separate tort action or constitutional claims of improper governmental taking or invasion of privacy for that conduct.

Bearder vs. State of Minnesota/MDH - Appellants Brief Filed

MN Dept of Health Response to 9-Family Appeal to MN Supreme Court

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.

Plantiff's Memo of Law on MN Baby DNA Lawsuit - Submitted by Attorney Randy Knutson for 10/9/09 Hennepin County Court Hearing

Defendants violated the public’s trust and violated the public’s right to privacy and bodily integrity. Since 1965, Defendants collected newborn blood specimens from children born in Minnesota. Defendants screened the blood for genetic disorders. Instead of destroying newborn blood samples and screening results obtained for this newborn screening, Defendants began operating a newborn blood and DNA warehouse. As of December 31, 2008, the warehouse held over a 1.5 million screening records and over 800,000 newborn blood specimens. Unbeknownst to the public at large, Defendants began sharing blood samples and screening results with private institutions for research projects. At no time did Defendants obtain consent for these activities.

HHS Proposes to Set National Policy to Permit State Government Retention of Newborn DNA - WITHOUT Parent Consent Requirements.

Diana Waletzko on Protecting Baby DNA

Diana Waletzko at the Citizens' Council on Health Care Press
Conference on Protecting Baby DNA. Tuesday, August 4, 2009.