Newborn Screening Advisory Committee.

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There shall be established Newborn Screening Advisory Committee (“Committee”) that will advise the Director of the Division of Public Health on issues relating to the newborn screening program, including intervention, treatment, and follow-up care for infants and children with metabolic, hematologic, endocrinologic, immunologic and certain structural disorders. Members shall be appointed by the Governor and serve 3-year terms that are renewable. The Committee shall have 13 members.

(1) The Department of Health and Social Services shall provide administrative support services required for the Committee. Members shall receive no compensation for their services as members.

(2) The Committee shall act by majority vote and as required by this State's Administrative Procedures Act, Chapter 101 of Title 29. The Committee shall meet at least 3 times annually.

(3) The Committee membership shall consist of:

3 individuals, or parents of individuals, affected by disorders identified by the screening panel; an ethicist; an attorney not employed by the State; 3 pediatric physicians; the Medical Director for the Division of Public Health, or his or her designee; the Laboratory Director for the Division of Public Health, or his or her designee; a representative from the Department of Services for Children Youth and their Families; the Chair of the Midwifery Advisory Council, or his or her designee; and a member of the public.

(4) The Committee shall elect a Chairperson to serve for at least 1 year from those members appointed by the Governor. A majority of the membership of the Committee shall constitute a quorum to transact its business.


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