HOUSE OF REPRESENTATIVES	H.B. NO.	1719
THIRTY-SECOND LEGISLATURE, 2024
STATE OF HAWAII

A BILL FOR AN ACT

RELATING TO DUCHENNE MUSCULAR DYSTROPHY.

BE IT ENACTED BY THE LEGISLATURE OF THE STATE OF HAWAII:

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

"Part . Newborn Duchenne

Muscular Dystrophy Screening

"§321- Newborn Duchenne muscular dystrophy screening. (a) Prior to discharge of any newborn in its care, a birthing facility shall perform on the newborn a test to screen for newborn Duchenne muscular dystrophy.

(b) Subsection (a) shall not apply if a parent, guardian, or other person having custody or control of the newborn objects to performance of the test required by subsection (a) because the test conflicts with their religious tenets and beliefs, and written objection is made a part of the newborn's medical record.

(c) Each birthing facility shall report Duchenne muscular dystrophy screening data to the department of health for quality assurance and improvement activities. At a minimum, the data shall include:

(1) The numbers of newborns screened and not screened;

(2) The timing of screening after birth;

(3) Screening results; and

(4) Other data required by the department of health.

(d) The department of health shall adopt rules pursuant to chapter 91 necessary for the purposes of this section.

(e) For the purposes of this section, "birthing facility" shall have the same meaning as in section 321-296."

SECTION 2. This Act does not affect rights and duties that matured, penalties that were incurred, and proceedings that were begun before its effective date.

SECTION 3. This Act shall take effect on July 1, 2024.

INTRODUCED BY:

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Report Title:

DOH; Newborns; Screening; Duchenne Muscular Dystrophy

Description:

Requires birthing facilities to screen newborns for Duchenne muscular dystrophy, and to report data to the Department of Health. Provides a screening exemption when parents or guardians object on religious grounds.

The summary description of legislation appearing on this page is for informational purposes only and is not legislation or evidence of legislative intent.