CHAPTER 136A
CENTER FOR CONGENITAL AND

 INHERITED DISORDERS

Referred to in §135.11

  136A.1  Purpose.
  To reduce and avoid adverse health conditions of inhabitants of the state, the Iowa department of public health shall initiate, conduct, and supervise screening and health care programs in order to detect and predict congenital or inherited disorders. The department shall assist in the translation and integration of genetic and genomic advances into public health services to improve health outcomes throughout the life span of the inhabitants of the state.
2004 Acts, ch 1031, §2, 12

  136A.2  Definitions.
  As used in this chapter, unless the context otherwise requires:
  1.  “Attending health care provider” means a licensed physician, nurse practitioner, certified nurse midwife, or physician assistant.
  2.  “Congenital disorder” means an abnormality existing prior to or at birth, including a stillbirth, that adversely affects the health and development of a fetus, newborn, child, or adult, including a structural malformation or a genetic, chromosomal, inherited, or biochemical disorder.
  3.  “Department” means the Iowa department of public health.
  4.  “Disorder” means a congenital or inherited disorder.
  5.  “Genetics” means the study of inheritance and how genes contribute to health conditions and the potential for disease.
  6.  “Genomics” means the functions and interactions of all human genes and their variation within human populations, including their interaction with environmental factors, and their contribution to health.
  7.  “Inherited disorder” means a condition caused by an abnormal change in a gene or genes passed from a parent or parents to their child. Onset of the disorder may be prior to or at birth, during childhood, or in adulthood.
  8.  “Stillbirth” means an unintended fetal death occurring after a gestation period of twenty completed weeks, or an unintended fetal death of a fetus with a weight of three hundred fifty or more grams.
2004 Acts, ch 1031, §3, 12
Referred to in §144.31A

  136A.3  Establishment of center for congenital and inherited disorders — duties.
  A center for congenital and inherited disorders is established within the department. The center shall do all of the following:
  1.  Initiate, conduct, and supervise statewide screening programs for congenital and inherited disorders amenable to population screening.
  2.  Initiate, conduct, and supervise statewide health care programs to aid in the early detection, treatment, prevention, education, and provision of supportive care related to congenital and inherited disorders.
  3.  Develop specifications for and designate a central laboratory in which tests conducted pursuant to the screening programs provided for in subsection 1 will be performed.
  4.  Gather, evaluate, and maintain information related to causes, severity, prevention, and methods of treatment for congenital and inherited disorders in conjunction with a central registry, screening programs, genetic health care programs, and ongoing scientific investigations and surveys.
  5.  Perform surveillance and monitoring of congenital and inherited disorders to determine the occurrence and trends of the disorders, to conduct thorough and complete epidemiological surveys, to assist in the planning for and provision of services to children with congenital and inherited disorders and their families, and to identify environmental and genetic risk factors for congenital and inherited disorders.
  6.  Provide information related to severity, causes, prevention, and methods of treatment for congenital and inherited disorders to the public, medical and scientific communities, and health science disciplines.
  7.  Implement public education programs, continuing education programs for health practitioners, and education programs for trainees of the health science disciplines related to genetics, congenital disorders, and inheritable disorders.
  8.  Participate in policy development to assure the appropriate use and confidentiality of genetic information and technologies to improve health and prevent disease.
  9.  Collaborate with state and local health agencies and other public and private organizations to provide education, intervention, and treatment for congenital and inherited disorders and to integrate genetics and genomics advances into public health activities and policies.
2004 Acts, ch 1031, §4, 12
Referred to in §136A.5B

  136A.4  Genetic health services.
  The center may initiate, conduct, and supervise genetic health services for the inhabitants of the state, including the provision of regional genetic consultation clinics, comprehensive neuromuscular health care outreach clinics, and other outreach services and clinics as established by rule.
2004 Acts, ch 1031, §5, 12

  136A.5  Newborn metabolic screening.
  1.  All newborns born in this state shall be screened for congenital and inherited disorders in accordance with rules adopted by the department.
  2.  An attending health care provider shall ensure that every newborn under the provider’s care is screened for congenital and inherited disorders in accordance with rules adopted by the department.
  3.  This section does not apply if a parent objects to the screening. If a parent objects to the screening of a newborn, the attending health care provider shall document the refusal in the newborn’s medical record and shall obtain a written refusal from the parent and report the refusal to the department as provided by rule of the department.
2004 Acts, ch 1031, §6, 12; 2005 Acts, ch 19, §33
Referred to in §136A.5A

  136A.5A  Newborn critical congenital heart disease screening.
  1.  Each newborn born in this state shall receive a critical congenital heart disease screening by pulse oximetry or other means as determined by rule, in conjunction with the metabolic screening required pursuant to section 136A.5.
  2.  An attending health care provider shall ensure that every newborn under the provider’s care receives the critical congenital heart disease screening.
  3.  This section does not apply if a parent objects to the screening. If a parent objects to the screening of a newborn, the attending health care provider shall document the refusal in the newborn’s medical record and shall obtain a written refusal from the parent and report the refusal to the department.
  4.  Notwithstanding any provision to the contrary, the results of each newborn’s critical congenital heart disease screening shall only be reported in a manner consistent with the reporting of the results of metabolic screenings pursuant to section 136A.5 if funding is available for implementation of the reporting requirement.
  5.  This section shall be administered in accordance with rules adopted pursuant to section 136A.8.
2013 Acts, ch 140, §91

  136A.5B  Cytomegalovirus public health initiative.
  1.  In accordance with the duties prescribed in section 136A.3, the center for congenital and inherited disorders shall collaborate with state and local health agencies and other public and private organizations to develop and publish or approve and publish informational materials to educate and raise awareness of cytomegalovirus and congenital cytomegalovirus among women who may become pregnant, expectant parents, parents of infants, attending health care providers, and others, as appropriate. The materials shall include information regarding all of the following:
  a.  The incidence of cytomegalovirus and congenital cytomegalovirus.
  b.  The transmission of cytomegalovirus to a pregnant woman or a woman who may become pregnant.
  c.  Birth defects caused by congenital cytomegalovirus.
  d.  Methods of diagnosing congenital cytomegalovirus.
  e.  Available preventive measures to avoid cytomegalovirus infection by women who are pregnant or who may become pregnant.
  f.  Early interventions, treatment, and services available for children diagnosed with congenital cytomegalovirus.
  2.  An attending health care provider shall provide to a pregnant woman during the first trimester of the pregnancy the informational materials published under this section. The center for congenital and inherited disorders shall make the informational materials available to attending health care providers upon request.
  3.  The department shall publish the informational materials on its internet site and shall specifically make the informational materials available electronically to child care facilities and child care homes as defined in section 237A.1, school nurses, hospitals, attending health care providers, and other health care providers offering care to pregnant women and infants.
2017 Acts, ch 77, §1; 2018 Acts, ch 1026, §51
Subsection 2 amended

  136A.6  Central registry.
  The center for congenital and inherited disorders shall maintain a central registry, or shall establish an agreement with a designated contractor to maintain a central registry, to compile, evaluate, retain, and disseminate information on the occurrence, prevalence, causes, treatment, and prevention of congenital disorders. Congenital disorders shall be considered reportable conditions in accordance with rules adopted by the department and shall be abstracted and maintained by the registry.
2004 Acts, ch 1031, §7, 12
Referred to in §144.13A

  136A.7  Confidentiality.
  The center for congenital and inherited disorders and the department shall maintain the confidentiality of any identifying information collected, used, or maintained pursuant to this chapter in accordance with section 22.7, subsection 2.
2004 Acts, ch 1031, §8, 12

  136A.8  Rules.
  The center for congenital and inherited disorders, with assistance provided by the Iowa department of public health, shall adopt rules pursuant to chapter 17A to administer this chapter.
2004 Acts, ch 1031, §9, 12
Referred to in §136A.5A

  136A.9  Cooperation of other agencies.
  All state, district, county, and city health or welfare agencies shall cooperate and participate in the administration of this chapter.
2004 Acts, ch 1031, §10, 12