House File 2074
HOUSE FILE
BY PETERSEN, CARROLL,
HEDDENS, HUSER,
and UPMEYER
Passed House, Date Passed Senate, Date
Vote: Ayes Nays Vote: Ayes Nays
Approved
A BILL FOR
1 An Act relating to the duties of the birth defects institute by
2 providing for a work group to study stillbirths and renaming
3 the institute.
4 BE IT ENACTED BY THE GENERAL ASSEMBLY OF THE STATE OF IOWA:
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PAG LIN
1 1 Section 1. LEGISLATIVE INTENT AND PURPOSE == STILLBIRTHS
1 2 PROTOCOL WORK GROUP.
1 3 1. It is the intent of the general assembly that the
1 4 department of public health study and develop prevention
1 5 strategies to reduce stillbirths and other congenital or
1 6 inherited disorders which cause the death and disability of
1 7 newborns in this state. It is the purpose of this Act to
1 8 enable the department to carry out the intent of the general
1 9 assembly through a stillbirths protocol work group and the
1 10 redesign of the birth defects institute.
1 11 2. The Iowa department of public health shall establish a
1 12 work group to develop protocol and implementation guidelines
1 13 for the evaluation of causes and prevention of stillbirths by
1 14 the center for congenital and inherited disorders. The
1 15 director of public health shall select the members of the work
1 16 group, which may include representatives from the child death
1 17 review team, the Iowa hospital association, the health care
1 18 industry, the health insurance industry, and parents or other
1 19 interested parties as deemed appropriate by the director. The
1 20 director shall submit a report from the work group to the
1 21 general assembly on or before January 15, 2005.
1 22 Sec. 2. NEW SECTION. 136E.1 PURPOSE.
1 23 To reduce and avoid adverse health conditions of
1 24 inhabitants of the state, the Iowa department of public health
1 25 shall initiate, conduct, and supervise screening and health
1 26 care programs in order to detect and predict congenital or
1 27 inherited disorders. The department shall assist in the
1 28 translation and integration of genetic and genomic advances
1 29 into public health services to improve health outcomes
1 30 throughout the life span of the inhabitants of the state.
1 31 Sec. 3. NEW SECTION. 136E.2 DEFINITIONS.
1 32 As used in this chapter, unless the context otherwise
1 33 requires:
1 34 1. "Attending health care provider" means a licensed
1 35 physician, nurse practitioner, certified nurse midwife, or
2 1 physician assistant.
2 2 2. "Congenital disorder" means an abnormality existing
2 3 prior to or at birth, including a stillbirth, that adversely
2 4 affects the health and development of a fetus, newborn, child,
2 5 or adult, including a structural malformation or a genetic,
2 6 chromosomal, inherited, or biochemical disorder.
2 7 3. "Department" means the Iowa department of public
2 8 health.
2 9 4. "Disorder" means a congenital or inherited disorder.
2 10 5. "Genetics" means the study of inheritance and how genes
2 11 contribute to health conditions and the potential for disease.
2 12 6. "Genomics" mean the functions and interactions of all
2 13 human genes and their variation within human populations,
2 14 including their interaction with environmental factors, and
2 15 their contribution to health.
2 16 7. "Inherited disorder" means a condition caused by an
2 17 abnormal change in a gene or genes passed from a parent or
2 18 parents to their child. Onset of the disorder may be prior to
2 19 or at birth, during childhood, or in adulthood.
2 20 8. "Stillbirth" means an unintended fetal death occurring
2 21 after a gestation period of twenty completed weeks, or an
2 22 unintended fetal death of a fetus with a weight of three
2 23 hundred fifty or more grams.
2 24 Sec. 4. NEW SECTION. 136E.3 ESTABLISHMENT OF CENTER FOR
2 25 CONGENITAL AND INHERITED DISORDERS == DUTIES.
2 26 A center for congenital and inherited disorders is
2 27 established within the department. The center shall do all of
2 28 the following:
2 29 1. Initiate, conduct, and supervise statewide screening
2 30 programs for congenital and inherited disorders amenable to
2 31 population screening.
2 32 2. Initiate, conduct, and supervise statewide health care
2 33 programs to aid in the early detection, treatment, prevention,
2 34 education, and provision of supportive care related to
2 35 congenital and inherited disorders.
3 1 3. Develop specifications for and designate a central
3 2 laboratory in which tests conducted pursuant to the screening
3 3 programs provided for in subsection 1 will be performed.
3 4 4. Gather, evaluate, and maintain information related to
3 5 causes, severity, prevention, and methods of treatment for
3 6 congenital and inherited disorders in conjunction with a
3 7 central registry, screening programs, genetic health care
3 8 programs, and ongoing scientific investigations and surveys.
3 9 5. Perform surveillance and monitoring of congenital and
3 10 inherited disorders to determine the occurrence and trends of
3 11 the disorders, to conduct thorough and complete
3 12 epidemiological surveys, to assist in the planning for and
3 13 provision of services to children with congenital and
3 14 inherited disorders and their families, and to identify
3 15 environmental and genetic risk factors for congenital and
3 16 inherited disorders.
3 17 6. Provide information related to severity, causes,
3 18 prevention, and methods of treatment for congenital and
3 19 inherited disorders to the public, medical and scientific
3 20 communities, and health science disciplines.
3 21 7. Implement public education programs, continuing
3 22 education programs for health practitioners, and education
3 23 programs for trainees of the health science disciplines
3 24 related to genetics, congenital disorders, and inheritable
3 25 disorders.
3 26 8. Participate in policy development to assure the
3 27 appropriate use and confidentiality of genetic information and
3 28 technologies to improve health and prevent disease.
3 29 9. Collaborate with state and local health agencies and
3 30 other public and private organizations to provide education,
3 31 intervention, and treatment for congenital and inherited
3 32 disorders and to integrate genetics and genomics advances into
3 33 public health activities and policies.
3 34 Sec. 5. NEW SECTION. 136E.4 GENETIC HEALTH SERVICES.
3 35 The center may initiate, conduct, and supervise genetic
4 1 health services for the inhabitants of the state, including
4 2 the provision of regional genetic consultation clinics,
4 3 comprehensive neuromuscular health care outreach clinics, and
4 4 other outreach services and clinics as established by rule.
4 5 Sec. 6. NEW SECTION. 136E.5 NEWBORN METABOLIC SCREENING.
4 6 1. All newborns and stillborns born in this state shall be
4 7 screened for congenital and inherited disorders in accordance
4 8 with rules adopted by the department.
4 9 2. An attending health care provider shall ensure that
4 10 every newborn and stillborn under the provider's care is
4 11 screened for congenital and inherited disorders in accordance
4 12 with rules adopted by the department.
4 13 3. This section does not apply if the parent objects to
4 14 the screening. If a parent objects to the screening of a
4 15 newborn, the attending health care provider shall document the
4 16 refusal in the newborn's medical record and shall obtain a
4 17 written refusal from the parent and report the refusal to the
4 18 department as provided by rule of the department.
4 19 Sec. 7. NEW SECTION. 136E.6 CENTRAL REGISTRY.
4 20 The center for congenital and inherited disorders shall
4 21 maintain a central registry, or shall establish an agreement
4 22 with a designated contractor to maintain a central registry,
4 23 to compile, evaluate, retain, and disseminate information on
4 24 the occurrence, prevalence, causes, treatment, and prevention
4 25 of congenital disorders. Congenital disorders shall be
4 26 considered reportable conditions in accordance with rules
4 27 adopted by the department and shall be abstracted and
4 28 maintained by the registry.
4 29 Sec. 8. NEW SECTION. 136E.7 CONFIDENTIALITY.
4 30 The center for congenital and inherited disorders and the
4 31 department shall maintain the confidentiality of any
4 32 identifying information collected, used, or maintained
4 33 pursuant to this chapter in accordance with section 22.7,
4 34 subsection 2.
4 35 Sec. 9. NEW SECTION. 136E.8 RULES.
5 1 The center for congenital and inherited disorders, with
5 2 assistance provided by the Iowa department of public health,
5 3 shall adopt rules pursuant to chapter 17A to administer this
5 4 chapter.
5 5 Sec. 10. NEW SECTION. 136E.9 COOPERATION OF OTHER
5 6 AGENCIES.
5 7 All state, district, county, and city health or welfare
5 8 agencies shall cooperate and participate in the administration
5 9 of this chapter.
5 10 Sec. 11. Chapter 136A, Code 2003, is repealed.
5 11 Sec. 12. CODE EDITOR DIRECTIVE.
5 12 1. The Code editor may transfer chapter 136E to chapter
5 13 136A.
5 14 2. The Code editor is directed to strike the words "birth
5 15 defects institute" and insert the words "center for congenital
5 16 and inherited disorders" where the words appear in section
5 17 144.13A.
5 18 3. The Code editor shall correct any references to the
5 19 center for congenital and inherited disorders as the successor
5 20 to the birth defects institute, including grammatical
5 21 constructions, anywhere else in the Code, in any bills
5 22 awaiting codification, and in any bills enacted by the
5 23 Eightieth General Assembly, 2004 Regular Session.
5 24 EXPLANATION
5 25 This bill relates to the duties of the birth defects
5 26 institute established in Code chapter 136A by providing for a
5 27 work group to study stillbirths and by renaming the institute.
5 28 A work group is required to be created by the Iowa
5 29 department of public health to develop protocol and
5 30 implementation guidelines for the evaluation of causes and
5 31 prevention of stillbirths. Members of the work group will be
5 32 selected by the director of public health who must report the
5 33 results of the work group to the general assembly by January
5 34 15, 2005.
5 35 The bill renames the birth defects institute the center for
6 1 congenital and inherited disorders. The bill expands the
6 2 institute's scope of study beyond birth defects to include the
6 3 study of the causes and prevention of all congenital and
6 4 inherited disorders, including stillbirths. The center will
6 5 continue the duties of the institute to maintain a central
6 6 registry, conduct screening programs, provide statewide health
6 7 care programs, and provide information to and educate the
6 8 public and medical and scientific communities. The center may
6 9 provide genetic health services through clinics or outreach
6 10 services. The bill permits parents the option to refuse
6 11 screening for their child.
6 12 The bill provides for confidentiality of identifiable
6 13 information collected, used, or maintained by the center or
6 14 department and provides the center authority to adopt rules.
6 15 The Code editor is directed to make all necessary changes
6 16 to existing provisions of the Code and prospective enactments
6 17 by the general assembly to codify the new Code chapter.
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