Announcement • Apr 2010 • Storing and Using Newborn DNA—Without Parent Consent

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

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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.