50-19-205. Newborn screening advisory committee -- membership -- duties.
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50-19-205 . Newborn screening advisory committee -- membership -- duties.
(1)There is a newborn screening advisory committee. The committee consists of 12 members appointed by the director of the department.
(a)The director shall appoint the following voting members:
(i)two members who are persons affected by or family members of a person affected by a disorder tested for pursuant to 50-19-203 ;
(ii)two members who are physicians or nurse practitioners who are board-certified in obstetrics, pediatrics, family medicine, or neonatology;
(iii)one member who is a representative of a birthing center;
(iv)one member who is a representative of medicaid or the insurance industry;
(v)one member who is a representative of an advocacy association regarding newborns with medical conditions or rare disorders;
(vi)one member who is a medical geneticist or who has at least 5 years of experience working in a testing laboratory; and
(vii)one member who works in a tribal health care system.
(b)The director shall appoint the following department employees as nonvoting members:
(i)the chief medical director;
(ii)a representative of the newborn screening program; and
(iii)a representative of the laboratory services bureau.
(a)Except as provided in subsection (3)(b), each voting committee member shall serve a staggered 3-year term and is subject to reappointment for one succeeding term.
(b)The director shall appoint the first nine voting members to an initial term of 1, 2, or 3 years so that the terms of no more than four members expire in any given year.
(4)The committee shall meet at least two times each year.
(5)The committee shall report its findings to the director at least once a year, if applicable, including providing recommendations that the department initiate rulemaking to add an additional metabolic or genetic disorder to the newborn screening protocol. In making recommendations to the department, the committee shall use federally recognized national standards for newborn screening, including the recommended uniform screening panel developed by the health resources and services administration of the United States department of health and human services.
(6)Members of the committee are not entitled to compensation for their services, but they are entitled to a mileage allowance, as provided in 2-18-503 , and travel and meal expenses, as provided in 2-18-501 and 2-18-502 .
(7)The committee shall gather information on recent developments in testing technology, investigate staff and equipment requirements of new tests, and perform other activities related to newborn screening. The committee may make recommendations to the director regarding conditions that should be added to the newborn screening panel.
(8)The committee is attached to the department of public health and human services for administrative purposes, and the department shall provide staff support to the committee.
(9)The committee shall give priority to reviewing Krabbe disease.