he Advisory Committee on Heritable Disorders and Genetic Diseases in Newborns and Children (ACH-DGDNC) is charged with advising the Secretary of Health and Human Services (HHS) in many areas surrounding genetic diseases in children, but specifically in the area of newborn screening. I will provide a brief history of the Committee, its charges and work that has been accomplished to date.
Under a section of the Children's Health Act of 2000, Congress directed the Secretary, HHS to establish an Advisory Committee on Heritable Disorders in Newborns and Children; HHS expanded the charge to the Committee to include genetic diseases, and renamed the Committee accordingly .
The Committee's purpose is to provide to the Secretary, HHS advice and recommendations concerning the grants and projects authorized under this legislation and technical information to develop policies and priorities for this program that will enhance the State and local health agencies' abilities to provide for newborn and child screening, counseling and health care services for newborns and children having or at risk for heritable disorders. Specifically, the Committee shall advise and guide the Secretary regarding the most appropriate application of universal newborn screening technologies, policies, guidelines and programs to effectively reduce the morbidity and mortality in newborns and children having or at risk for heritable disorders.
ACHDGDNC is directed to review and report regularly on newborn and childhood screening practices, to recommend improvements in the national newborn and childhood screening programs, and to engage in the following activities:
The author is a Member and Chair of the Secretary's Advisory Committee on Heritable Disorders and Genetic Diseases in Newborns and Children