Authorizes department of health to establish a statewide Hawaii birth defects program. (SD2)

A BILL FOR AN ACT

SECTION 1. Chapter 321, Hawaii Revised Statutes, is amended by adding a new part to be appropriately designated and to read as follows:

"PART   . BIRTH DEFECTS PROGRAM

§321-   Definitions. As used in this part, unless the context requires otherwise:

"Adverse reproductive outcome" includes, but is not limited to, birth defect, neonatal and postnatal death up to one year of age, medical termination of pregnancy, and fetal death including miscarriage, spontaneous abortion, and stillbirth.

"Birth defect" means any structural or biochemical abnormality, regardless of cause, diagnosed at any time before or after birth, that requires medical or surgical intervention or that interferes with normal growth or development.

§321-   Birth defects program. (a) The department of health may establish a statewide Hawaii birth defects program to:

(b) For the purpose of the birth defects program collection of birth defect data, providers of health care shall report or make available to the birth defects program health care records and information relating to the occurrence of birth defects in the form and manner provided by the department. The department shall have access to any medical information that pertains to a diagnosed or suspected birth defect or other adverse reproductive outcome, including the records of the mother and child.

(c) The material collected under this part shall be used or published only for the purpose of advancing medical research, medical education, or education of the public in the interest of reducing birth defects. The identity, or any group of facts which tends to lead to the identity, of any person whose condition or treatment has been studied shall be confidential and shall not be revealed in any report or any other matter prepared, released, or published. Researchers, however, may use the names of persons when requesting additional information for research studies approved by an independent review board; provided that when a request for additional information is to be made directly from a patient parent or guardian, the researcher shall first obtain approval for such request from the patient's attending physician.

(d) The birth defects program may develop and implement procedures for the collection, analysis, and distribution of information to the public and government agencies; procedures for providing information to families of children with birth defects and to their primary care providers relating to services available to the family to help improve health, emotional, and educational outcomes; and policies and procedures to maintain confidentiality of the affected families.

§321-   Birth defects special fund. (a) The department is authorized to issue commemorative souvenir birth and marriage certificates. These certificates shall be issued by the birth defects program and shall not be used for official purposes.

(b) There is established in the treasury of the State the birth defects special fund, into which shall be deposited all moneys collected by the department from the sale of commemorative souvenir birth and marriage certificates.

(c) Moneys in the birth defects special fund shall be used for the payment of operating expenses of the birth defects program.

(d) All unexpended and unencumbered moneys remaining in the birth defects special fund at the close of each fiscal year which are deemed, by the director of health, to be in excess of the moneys necessary to carry out the purposes of this part over the next following fiscal year shall lapse to the credit of the state general fund.

(e) The director shall submit an annual report to the legislature twenty days prior to the convening of each regular session, identifying fund balances, transfers, and expenditures made from the birth defects special fund, and the purposes of each expenditure.

(f) The director may adopt rules pursuant chapter 91 as necessary to set fees for the commemorative souvenir birth and marriage certificates and as necessary for the purpose of this part."

SECTION 2. There is appropriated out of the birth defects special fund the sum of $1, or so much thereof as may be necessary and available for fiscal year 2001-2002, and the sum of $1, or so much thereof as may be necessary and available for fiscal year 2002-2003. The sums appropriated shall be expended by the department of health for the purposes of this Act.

SECTION 3. This Act shall take effect on July 1, 2001.