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COMMITTEE REPORT
March 6, 2002
S. 1014
Introduced by Senators Hawkins, Grooms, Ravenel, Giese, Branton, Richardson, Peeler, Waldrep, Martin, Verdin, Thomas, Courson and Gregory
S. Printed 3/6/02--S.
Read the first time February 13, 2002.
To whom was referred a Bill (S. 1014) to amend Section 44-37-30, as amended, Code of Laws of South Carolina, 1976, relating to neonatal testing of children, so as to require parental consent, etc., respectfully
That they have duly and carefully considered the same and recommend that the same do pass with amendment:
Amend the bill, as and if amended, by striking all after the enacting words and inserting:
/SECTION 1. Section 44-37-30 of the 1976 Code is amended to read:
"Section 44-37-30. (A) Every A child born in this State, except a child born of a parent who objects on religious grounds and indicates this objection before testing on a form promulgated in regulation by the Department of Health and Environmental Control, shall have neonatal testing to detect inborn metabolic errors and hemoglobinopathies. The Department of Health and Environmental Control shall prescribe by regulation the tests to be performed, the persons and institutions responsible for obtaining necessary samples for the prescribed test, the procedures to be followed in testing and recording the results of the tests, methods and procedures for storage of the samples, and the provision of appropriate counseling and medical referral. Blood taken to perform these tests must be stored by the department at minus 20°
centigrade and available for additional tests as the department prescribes by regulation.
(B) Information obtained as a result of the tests conducted pursuant to this section is confidential and may be released only to a parent or legal guardian of the child, the child's physician, and the child when eighteen years of age or older when requested on a form promulgated in regulation by the department.
(C) A blood sample obtained pursuant to this section is confidential and may be released only as the parent or legal guardian of the child from whom a blood sample was obtained, or the child when eighteen years of age or older, directs the department at the time of testing or at any time after that on a form promulgated in regulation by the department.
(D)(1) Unless otherwise directed pursuant to this subsection, a blood sample obtained pursuant to this section must be stored by the department at minus 20º centigrade and may be released for purposes of confidential, anonymous scientific study. The release of a blood sample must conform with regulations promulgated by the department. At the time of testing or at any time after that, on a form promulgated in regulation by the department, the parent or legal guardian of the child from whom a blood sample was obtained, or the child when eighteen years of age or older, may direct the department to:
(a) return a blood sample in its entirety and any test results not less than two years after the date of testing;
(b) destroy a blood sample in a scientifically acceptable manner not less than two years after the date of the testing; or
(c) store a blood sample at minus 20º centigrade but not release the blood sample for confidential, anonymous scientific study.
(2) A blood sample released for confidential, anonymous study pursuant to this section must not contain information which may be used to determine the identity of the donor. A blood sample released pursuant to this section may contain demographic or other statistical information. If scientific study identifies genetic information that may benefit the child, the department may notify confidentially the parent or legal guardian, or the child if eighteen years of age or older, of this information.
(E) (1) A blood sample that has not been stored at minus 20° centigrade before the effective date of this section must be destroyed in a scientifically acceptable manner six months from the effective date of this section unless a parent or legal guardian of a child from whom a blood sample was obtained, or the child if eighteen years of age or older, requests return of the blood sample on a form provided by the department.
(2) A blood sample stored at minus 20° centigrade pursuant to this section before the effective date of this section must be retained as prescribed in subsection (D) unless directed by the parent or legal guardian of the child from whom a blood sample was obtained to destroy or return the blood sample.
(F) The department shall promulgate regulations necessary for the implementation of this section. All forms must include information concerning the benefits of neonatal testing and storage of a blood sample.
(G) A person who violates this section or fails to comply with the regulations promulgated pursuant to this section or who provides or obtains or otherwise tampers with a blood sample collected pursuant to this section is guilty of a misdemeanor felony and, upon conviction, must be fined not more than one hundred fifty thousand dollars or imprisoned for not more than thirty days. Children of parents objecting to tests on religious grounds are not required to receive the tests three years."
SECTION 2. This act takes effect upon approval by the Governor./
Renumber sections to conform.
Amend title to conform.
HARVEY S. PEELER, JR. for Committee.
TO AMEND SECTION 44-37-30, AS AMENDED, CODE OF LAWS OF SOUTH CAROLINA, 1976, RELATING TO NEONATAL TESTING OF CHILDREN, SO AS TO REQUIRE PARENTAL CONSENT TO OBTAIN SAMPLES FOR TESTING AND TO PERFORM RESEARCH USING A SAMPLE TAKEN, TO AUTHORIZE A PARENT OR A PERSON OVER EIGHTEEN TO REQUEST IN WRITING THAT ANY SAMPLE TAKEN FOR TESTING BE DESTROYED AND TO REQUIRE THE DEPARTMENT OF HEALTH AND ENVIRONMENTAL CONTROL TO PROVIDE A REQUEST FORM ON ITS WEBSITE, TO REQUIRE THE DEPARTMENT TO DESTROY A SAMPLE FIFTEEN YEARS AFTER THE BIRTH OF A CHILD, AND TO PROVIDE CRIMINAL PENALTIES FOR VIOLATIONS.
Be it enacted by the General Assembly of the State of South Carolina:
SECTION 1. Section 44-37-30 of the 1976 Code, as amended by Act 418 of 1994, is further amended by adding at the end:
"(D) Prior to obtaining the samples provided for in this section, the consent of at least one parent of the child who is present at the birth must be obtained on a form provided by the department for this purpose.
(E) The department shall not conduct, or allow to be conducted, any genetic research or other research on a sample without the express written consent of the legal custodial parent of a child whose sample has been taken under this section or a person eighteen years or older whose sample has been taken under this section.
(F) Upon the written request of a legal custodial parent of a child whose sample has been taken under this section, or upon the written request of a person eighteen years or older whose sample has been taken under this section, the department shall destroy the sample. The department shall provide a form for this purpose, and shall make the form available for download on its website, or allow persons to request through the department's website that the form be mailed to them. The department shall provide a toll free number for this purpose.
(G) Notwithstanding any other provision of this section, the department shall destroy a sample fifteen years after the birth of a child whose sample has been taken.
(H) A person who obtains or provides a sample other than those persons authorized in subsection (B) or a person who tampers with a sample is guilty of a felony, and upon conviction, must be imprisoned three years and fined fifty-thousand dollars."
SECTION 2. This act takes effect upon approval by the Governor.
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