(1) The executive director of the department of public health and environment shall have the authority to:
Establish and administer state programs for newborn screening and genetic counseling and education;
Promulgate rules, regulations, and standards for the provision of newborn screeningprograms and genetic counseling and education programs;
Designate such personnel as are necessary to carry out the provisions of this part 10,disburse and collect such funds as are available to the administration of this part 10, and fix reasonable fees to be charged for services pursuant to this part 10;
Gather and disseminate information to further the public's understanding of newbornscreening and genetic counseling and education programs;
Establish systems for recording information obtained in newborn screening and genetic counseling and education programs.
(2) The executive director of the department shall comply with the following provisions:
Newborn screening shall be provided in the most efficient and cost-effective mannerpossible and newborn screening and diagnostic services should be carried out under adequate standards of supervision and quality control;
No program for genetic counseling shall require mandatory participation, restrictionof childbearing, or be a prerequisite to eligibility for, or receipt of, any other service or assistance from, or to participation in, any other program;
Genetic counseling services shall be available to persons in need, such counselingshall be nondirective, and such counseling shall emphasize informing the client and not require restriction of childbearing;
The extremely personal decision to bear children shall remain the free choice andresponsibility of the individual, and such free choice and responsibility shall not be restricted by any of the genetic services of the state;
All information gathered by the department or by other agencies, entities, and individuals conducting programs and projects on newborn screening and genetic counseling and education, other than statistical information and information that the parent or guardian of a newborn allows to be released through the parent's or guardian's informed consent, is confidential. Public and private access to newborn patient data is limited to data compiled without the newborn's name. The information gathered pursuant to this subsection (2)(e) does not restrict the department from performing follow-up services with newborns, their parents or guardians, and health care providers.
Information on the operation of all programs on newborn screening and genetic counseling and education within the state, except for confidential information obtained from participants in such programs, shall be open and freely available to the public;
All participants in programs on genetic counseling and education shall be informedof the nature of possible risks involved in participation in such a program or project, and shall be informed of the nature and cost of available therapies or maintenance programs for those affected by hereditary disorders, and shall be informed of the possible benefits and risks of such therapies and programs;
Nothing in this section shall be construed to require any hospital or other healthfacility or any physician or other health professional to provide genetic counseling beyond the usual and customary and accepted practice nor shall any hospital or other health facility be held liable for not providing such genetic counseling.
Source: L. 81: Entire part added, p. 1300, § 1, effective July 1. L. 94: IP(1), IP(2), and (2)(e) amended, p. 2768, § 455, effective July 1. L. 2018: IP(2) and (2)(e) amended, (SB 181006), ch. 368, p. 2213, § 3, effective July 1.
Cross references: For the legislative declaration contained in the 1994 act amending the introductory portions to subsections (1) and (2) and subsection (2)(e), see section 1 of chapter 345, Session Laws of Colorado 1994.