STAND. COM. REP. NO.2417

Honolulu, Hawaii

, 2002

RE: S.B. No. 2763

S.D. 1

 

 

Honorable Robert Bunda

President of the Senate

Twenty-First State Legislature

Regular Session of 2002

State of Hawaii

Sir:

Your Committee on Health and Human Services, to which was referred S.B. No. 2763 entitled:

"A BILL FOR AN ACT RELATING TO BIRTH DEFECTS,"

begs leave to report as follows:

The purpose of this measure is to permit the Department of Health (DOH) to establish a birth defects program (program), and establish a special fund for the programs operating expenses.

Testimony in support of this measure was received from the DOH, Office of Informational Practices, March of Dimes, Kaiser Permanente, and three private citizens. Testimony in opposition was received from the Christian Science Committee on Publication for Hawaii and two private citizens.

According to testimony of the DOH, each year approximately 800 to 1,000 babies, or one out of twenty births in Hawaii, have birth defects. Birth defects are the leading cause of infant mortality and contribute significantly to childhood morbidity and long-term disability. Birth defects information can be used to identify possible causes or risk factors and populations at risk, and assist in strategies of prevention, among other things.

The DOH administratively created the program thirteen years ago, making Hawaii one of 33 states that have such a program. This measure would formalize the program into statute, making it a permanent program with a dedicated source of funding.

Your Committee has amended the measure by:

(1) Deleting the creation of a special fund;

(2) Adding a definition of "institutional review board";

(3) Requiring the DOH to establish a Hawaii birth defects program, rather than conferring discretion to do so;

(4) Enabling the DOH to adopt rules in accordance with Chapter 91, Hawaii Revised Statutes, to effectuate the program;

(5) Clarifying the general obligations of the program;

(6) Clarifying the confidentiality requirements of the program;

(7) Moving the information collection and use of collected information provisions of the program from Chapter 321, Hawaii Revised Statutes, to Chapter 324, Hawaii Revised Statutes;

(8) Creating a birth defects registry to record information collected by the program, and specifying the permissible use and the confidentiality of the collected information and providing a misdemeanor penalty for violation;

(9) Exempting persons who do not wish to participate in the program from sharing medical information with the program; and

(10) Changing the appropriation from $200,000, to $500,000.

As affirmed by the record of votes of the members of your Committee on Health and Human Services that is attached to this report, your Committee is in accord with the intent and purpose of S.B. No. 2763, as amended herein, and recommends that it pass Second Reading in the form attached hereto as S.B. No. 2763, S.D. 1, and be referred to the Committee on Ways and Means.

 

Respectfully submitted on behalf of the members of the Committee on Health and Human Services,

____________________________

DAVID MATSUURA, Chair