Newborn Blood Screening Advisory Committee

(A) The Commissioner shall establish a permanent advisory committee to advise the Commissioner on matters pertaining to the Newborn Blood Screening Program including, but not limited to: (1) the listing of treatable diseases and disorders that meet the criteria in the definition of "Mandated Newborn Blood Screening" for which newborn blood screening should be mandated; (2) the listing of diseases and disorders that meet the criteria in the definition for "Pilot Study" that are offered as Optional Newborn Blood Screening; (3) quality assurance and control measures utilized for the operation of the Newborn Blood Screening Program; and (4) new and emerging research in newborn screening. (B) Membership of the committee may include, but not be limited to, parents and other consumers, practicing pediatricians, public health officials, neonatologists, obstetricians, clinicians and researchers specializing in newborn diseases and disorders, clinical geneticists, birth hospital representatives, Newborn Blood Screening Program professionals, medical ethicists, and other experts as needed to represent a variety of related fields such as emerging technologies and health insurance. (C) The committee shall meet not less than twice per year. (D) On an annual basis, the Newborn Blood Screening Program shall submit to the committee a report on the quality assurance and control measures utilized for the operation of the Newborn Blood Screening Program and the committee shall review and provide guidance on these measures.