§661.40. Genetic and Metabolic Diseases Advisory Board

a)         The Director shall create the Genetic and Metabolic Diseases Advisory Committee to advise the Department regarding issues relevant to newborn screenings of metabolic diseases and other newborn non-metabolic conditions (Section 5(a) of the Genetic and Metabolic Diseases Advisory Committee Act).

 

b)         The Advisory Committee shall:

 

1)         Advise the Department regarding issues relevant to its Genetic Program;

 

2)         Advise the Department regarding optimal laboratory methodologies for screening of the targeted conditions;

 

3)         Recommend to the Department consultants who are qualified to diagnose a condition detected by screening, provide management of care, and genetic counseling for the family;

 

4)         Monitor the incidence of each condition for which newborn screening is done, evaluate the effects of treatment and genetic counseling, and provide advice on disorders to be included in newborn screening panel;

 

5)         Advise the Department on educational programs for professionals and the general public; and

 

6)         Advise the Department on new developments and areas of interest in relation to the Department's Genetics Program (Section 5(b) of the Genetic and Metabolic Diseases Advisory Committee Act).

 

c)         The Advisory Committee shall consist of 20 members appointed by the Director.  Membership shall include physicians, geneticists, nurses, nutritionists, and other allied health professionals, as well as patients and parents. Ex-officio members may be appointed, but shall not have voting privileges. (Section 5(c) of the Genetic and Metabolic Diseases Advisory Committee Act).

 

d)         The addition of specific disorders to this Part shall be reviewed by the Advisory Committee. The Department will consider the recommendations of the Advisory Committee in determining whether to include an additional disorder in the screening panel. Implementation of the Department's determination is subject to that determination's adoption by rule.