FIRST REGULAR SESSION
94TH GENERAL ASSEMBLY
INTRODUCED BY REPRESENTATIVES HARRIS (110) (Sponsor), MEADOWS, KUESSNER, FALLERT, McGHEE, SANDER, SCHIEFFER, ONDER AND FUNDERBURK (Co-sponsors).
Read 1st time March 29, 2007 and copies ordered printed.
D. ADAM CRUMBLISS, Chief Clerk
AN ACT
To amend chapter 191, RSMo, by adding thereto one new section relating to the prenatally diagnosed condition awareness act.
Be it enacted by the General Assembly of the state of Missouri, as follows:
Section A. Chapter 191, RSMo, is amended by adding thereto one new section, to be known as section 191.385, to read as follows:
191.385. 1. This section shall be known and may be cited as the "Prenatally Diagnosed Condition Awareness Act".
2. As used in this section, the following terms shall mean:
(1) "Down syndrome", a chromosomal disorder caused by an error in cell division that results in the presence of an extra whole or partial copy of chromosome 21;
(2) "Health care provider", any person or entity required by state or federal law or regulation to be licensed, registered, or certified to provide health care services, and who is so licensed, registered, or certified;
(3) "Prenatally diagnosed condition", any fetal health condition identified by prenatal genetic testing or prenatal screening procedures;
(4) "Prenatal test", diagnostic or screening tests offered to pregnant women seeking routine prenatal care that are administered on a required or recommended basis by a health care provider based on medical history, family background, ethnic background, previous test results, or other risk factors.
3. The director of the department of health and senior services may authorize and oversee certain activities, including the awarding of grants, contracts, or cooperative agreements, to:
(1) Collect, synthesize, and disseminate current scientific information relating to Down syndrome or other prenatally diagnosed conditions; and
(2) Coordinate the provision of and access to new or existing support services for patients receiving a positive test diagnosis for Down syndrome or other prenatally diagnosed conditions, including:
(a) The establishment of a resource telephone hotline and Internet web site accessible to patients receiving a positive test result;
(b) The establishment of a clearinghouse of scientific information, clinical course, life expectancy, development potential, and quality of life relating to Down syndrome or other prenatally diagnosed conditions;
(c) The establishment of statewide and local peer-support programs;
(d) The establishment of a state registry, or network of local registries, of families willing to adopt newborns with Down syndrome or other prenatally diagnosed conditions, and links to adoption agencies willing to place babies with Down syndrome or other prenatally diagnosed conditions, with families willing to adopt; and
(e) The establishment of awareness and education programs for health care providers who provide the results of prenatal tests for Down syndrome or other prenatally diagnosed conditions to patients.
4. The director shall provide assistance to local health departments to integrate the results of prenatal testing into a state vital statistics and birth defects surveillance program. The director shall ensure that activities carried out under this subsection are sufficient to extract population-level data relating to state rates and results of prenatal testing.
5. Upon receipt of a positive test result from a prenatal test for Down syndrome or other prenatally diagnosed conditions performed on a patient, the health care provider shall provide the patient with the following:
(1) Up-to-date scientific written information concerning the life expectancy, clinical course, and intellectual and functional development, and treatment options for a fetus diagnosed with or child born with Down syndrome or other prenatally diagnosed conditions;
(2) Referral to supportive services providers, including information hotlines specific to Down syndrome or other prenatally diagnosed conditions, resource centers or clearinghouses, and other education and support programs described in subdivision (2) of subsection 3 of this section.
6. (1) Notwithstanding the provisions of subsections 4 and 5 of this section, nothing in this section shall be construed to permit or require the collection, maintenance, or transmission without the health care provider obtaining the prior written consent of the patient of:
(a) Health information or data that identify a patient, or with respect to which there is a reasonable basis to believe the information could be used to identify the patient, including the patient's name, address, health care provider, or hospital; and
(b) Data that are not related to the epidemiology of the condition being tested for.
(2) Not later than one hundred eighty days after the effective date of this section, the director shall establish by rule guidelines concerning the implementation of subdivision (1) of this subsection.
7. Not later than two years after the effective date of this section and every two years thereafter, the director shall submit a report to the general assembly concerning the implementation of the guidelines described in subdivision (2) of subsection 6 of this section. Not later than one year after the effective date of this section, the director shall submit a report to the general assembly concerning the effectiveness of current health care and family support programs serving as resources for the families of children with disabilities.
8. The department of health and senior services may promulgate rules to implement the provisions of this section. Any rule or portion of a rule, as that term is defined in section 536.010, RSMo, that is created under the authority delegated in this section shall become effective only if it complies with and is subject to all of the provisions of chapter 536, RSMo, and, if applicable, section 536.028, RSMo. This section and chapter 536, RSMo, are nonseverable and if any of the powers vested with the general assembly pursuant to chapter 536, RSMo, to review, to delay the effective date, or to disapprove and annul a rule are subsequently held unconstitutional, then the grant of rulemaking authority and any rule proposed or adopted after August 28, 2007, shall be invalid and void.
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