From Developing Guidelines to Implementing Legislation: Actions of the US Advisory Committee on Heritable Disorders in Newborns and Children Toward Advancing and Improving Newborn Screening

Federal advisory committees (or commissions, councils, or task forces) are created either by congressional action or a federal department to bring together a variety of viewpoints on specific policy issues. The committees or advisory bodies are generally directed to advise various bodies within the government, either by congressional mandate, government decree, or executive order. The committees are often created to aid the government in subject matters with difficult issues. In the Department of Health and Human Services (HHS), current advisory committees range from advising the Secretary, Department of Health and Human Services, on immunization practices, to organ donation, blood safety, to issues related to newborn and child screening. This article describes the Secretary's Advisory Committee on Heritable Disorders in Newborns and Children. Its history offers insight into connection of the development of policy guidelines and the creation of legislation to implement that policy. Its current activities have affected and will continue to affect not only state newborn screening programs but also the policy and practice of screening children for heritable disorders.

Keywords: newborn screening, policy development, rare disorders