Text: HF02361 Text: HF02363 Text: HF02300 - HF02399 Text: HF Index Bills and Amendments: General Index Bill History: General Index
PAG LIN
1 1 HOUSE FILE 2362
1 2
1 3 AN ACT
1 4 RELATING TO THE DUTIES OF THE BIRTH DEFECTS INSTITUTE BY
1 5 PROVIDING FOR A WORK GROUP TO STUDY STILLBIRTHS AND RENAMING
1 6 THE INSTITUTE.
1 7
1 8 BE IT ENACTED BY THE GENERAL ASSEMBLY OF THE STATE OF IOWA:
1 9
1 10 Section 1. LEGISLATIVE INTENT AND PURPOSE – STILLBIRTHS
1 11 PROTOCOL WORK GROUP.
1 12 1. It is the intent of the general assembly that the
1 13 department of public health study and develop prevention
1 14 strategies to reduce stillbirths and other congenital or
1 15 inherited disorders which cause the death and disability of
1 16 newborns in this state. It is the purpose of this Act to
1 17 enable the department to carry out the intent of the general
1 18 assembly through a stillbirths protocol work group and the
1 19 redesign of the birth defects institute.
1 20 2. The Iowa department of public health shall establish a
1 21 work group to develop protocol and implementation guidelines
1 22 for the evaluation of causes and prevention of stillbirths
1 23 including environmental and maternal factors. The director of
1 24 public health shall select the members of the work group,
1 25 which may include representatives from the child death review
1 26 team, the health care industry, the health insurance industry,
1 27 and parents or other interested parties as deemed appropriate
1 28 by the director. The director shall submit a report from the
1 29 work group to the general assembly on or before July 15, 2005.
1 30 Sec. 2. NEW SECTION. 136E.1 PURPOSE.
1 31 To reduce and avoid adverse health conditions of
1 32 inhabitants of the state, the Iowa department of public health
1 33 shall initiate, conduct, and supervise screening and health
1 34 care programs in order to detect and predict congenital or
1 35 inherited disorders. The department shall assist in the
2 1 translation and integration of genetic and genomic advances
2 2 into public health services to improve health outcomes
2 3 throughout the life span of the inhabitants of the state.
2 4 Sec. 3. NEW SECTION. 136E.2 DEFINITIONS.
2 5 As used in this chapter, unless the context otherwise
2 6 requires:
2 7 1. "Attending health care provider" means a licensed
2 8 physician, nurse practitioner, certified nurse midwife, or
2 9 physician assistant.
2 10 2. "Congenital disorder" means an abnormality existing
2 11 prior to or at birth, including a stillbirth, that adversely
2 12 affects the health and development of a fetus, newborn, child,
2 13 or adult, including a structural malformation or a genetic,
2 14 chromosomal, inherited, or biochemical disorder.
2 15 3. "Department" means the Iowa department of public
2 16 health.
2 17 4. "Disorder" means a congenital or inherited disorder.
2 18 5. "Genetics" means the study of inheritance and how genes
2 19 contribute to health conditions and the potential for disease.
2 20 6. "Genomics" mean the functions and interactions of all
2 21 human genes and their variation within human populations,
2 22 including their interaction with environmental factors, and
2 23 their contribution to health.
2 24 7. "Inherited disorder" means a condition caused by an
2 25 abnormal change in a gene or genes passed from a parent or
2 26 parents to their child. Onset of the disorder may be prior to
2 27 or at birth, during childhood, or in adulthood.
2 28 8. "Stillbirth" means an unintended fetal death occurring
2 29 after a gestation period of twenty completed weeks, or an
2 30 unintended fetal death of a fetus with a weight of three
2 31 hundred fifty or more grams.
2 32 Sec. 4. NEW SECTION. 136E.3 ESTABLISHMENT OF CENTER FOR
2 33 CONGENITAL AND INHERITED DISORDERS – DUTIES.
2 34 A center for congenital and inherited disorders is
2 35 established within the department. The center shall do all of
3 1 the following:
3 2 1. Initiate, conduct, and supervise statewide screening
3 3 programs for congenital and inherited disorders amenable to
3 4 population screening.
3 5 2. Initiate, conduct, and supervise statewide health care
3 6 programs to aid in the early detection, treatment, prevention,
3 7 education, and provision of supportive care related to
3 8 congenital and inherited disorders.
3 9 3. Develop specifications for and designate a central
3 10 laboratory in which tests conducted pursuant to the screening
3 11 programs provided for in subsection 1 will be performed.
3 12 4. Gather, evaluate, and maintain information related to
3 13 causes, severity, prevention, and methods of treatment for
3 14 congenital and inherited disorders in conjunction with a
3 15 central registry, screening programs, genetic health care
3 16 programs, and ongoing scientific investigations and surveys.
3 17 5. Perform surveillance and monitoring of congenital and
3 18 inherited disorders to determine the occurrence and trends of
3 19 the disorders, to conduct thorough and complete
3 20 epidemiological surveys, to assist in the planning for and
3 21 provision of services to children with congenital and
3 22 inherited disorders and their families, and to identify
3 23 environmental and genetic risk factors for congenital and
3 24 inherited disorders.
3 25 6. Provide information related to severity, causes,
3 26 prevention, and methods of treatment for congenital and
3 27 inherited disorders to the public, medical and scientific
3 28 communities, and health science disciplines.
3 29 7. Implement public education programs, continuing
3 30 education programs for health practitioners, and education
3 31 programs for trainees of the health science disciplines
3 32 related to genetics, congenital disorders, and inheritable
3 33 disorders.
3 34 8. Participate in policy development to assure the
3 35 appropriate use and confidentiality of genetic information and
4 1 technologies to improve health and prevent disease.
4 2 9. Collaborate with state and local health agencies and
4 3 other public and private organizations to provide education,
4 4 intervention, and treatment for congenital and inherited
4 5 disorders and to integrate genetics and genomics advances into
4 6 public health activities and policies.
4 7 Sec. 5. NEW SECTION. 136E.4 GENETIC HEALTH SERVICES.
4 8 The center may initiate, conduct, and supervise genetic
4 9 health services for the inhabitants of the state, including
4 10 the provision of regional genetic consultation clinics,
4 11 comprehensive neuromuscular health care outreach clinics, and
4 12 other outreach services and clinics as established by rule.
4 13 Sec. 6. NEW SECTION. 136E.5 NEWBORN METABOLIC SCREENING.
4 14 1. All newborns born in this state shall be screened for
4 15 congenital and inherited disorders in accordance with rules
4 16 adopted by the department.
4 17 2. An attending health care provider shall ensure that
4 18 every newborn under the provider's care is screened for
4 19 congenital and inherited disorders in accordance with rules
4 20 adopted by the department.
4 21 3. This section does not apply if the parent objects to
4 22 the screening. If a parent objects to the screening of a
4 23 newborn, the attending health care provider shall document the
4 24 refusal in the newborn's medical record and shall obtain a
4 25 written refusal from the parent and report the refusal to the
4 26 department as provided by rule of the department.
4 27 Sec. 7. NEW SECTION. 136E.6 CENTRAL REGISTRY.
4 28 The center for congenital and inherited disorders shall
4 29 maintain a central registry, or shall establish an agreement
4 30 with a designated contractor to maintain a central registry,
4 31 to compile, evaluate, retain, and disseminate information on
4 32 the occurrence, prevalence, causes, treatment, and prevention
4 33 of congenital disorders. Congenital disorders shall be
4 34 considered reportable conditions in accordance with rules
4 35 adopted by the department and shall be abstracted and
5 1 maintained by the registry.
5 2 Sec. 8. NEW SECTION. 136E.7 CONFIDENTIALITY.
5 3 The center for congenital and inherited disorders and the
5 4 department shall maintain the confidentiality of any
5 5 identifying information collected, used, or maintained
5 6 pursuant to this chapter in accordance with section 22.7,
5 7 subsection 2.
5 8 Sec. 9. NEW SECTION. 136E.8 RULES.
5 9 The center for congenital and inherited disorders, with
5 10 assistance provided by the Iowa department of public health,
5 11 shall adopt rules pursuant to chapter 17A to administer this
5 12 chapter.
5 13 Sec. 10. NEW SECTION. 136E.9 COOPERATION OF OTHER
5 14 AGENCIES.
5 15 All state, district, county, and city health or welfare
5 16 agencies shall cooperate and participate in the administration
5 17 of this chapter.
5 18 Sec. 11. Chapter 136A, Code 2003, is repealed.
5 19 Sec. 12. CODE EDITOR DIRECTIVE.
5 20 1. The Code editor may transfer chapter 136E to chapter
5 21 136A.
5 22 2. The Code editor is directed to strike the words "birth
5 23 defects institute" and insert the words "center for congenital
5 24 and inherited disorders" where the words appear in section
5 25 144.13A.
5 26 3. The Code editor shall correct any references to the
5 27 center for congenital and inherited disorders as the successor
5 28 to the birth defects institute, including grammatical
5 29 constructions, anywhere else in the Code, in any bills
5 30 awaiting codification, and in any bills enacted by the
5 31 Eightieth General Assembly, 2004 Regular Session.
5 32
5 33
5 34
5 35 CHRISTOPHER C. RANTS
6 1 Speaker of the House
6 2
6 3
6 4
6 5 JEFFREY M. LAMBERTI
6 6 President of the Senate
6 7
6 8 I hereby certify that this bill originated in the House and
6 9 is known as House File 2362, Eightieth General Assembly.
6 10
6 11
6 12
6 13 MARGARET THOMSON
6 14 Chief Clerk of the House
6 15 Approved , 2004
6 16
6 17
6 18
6 19 THOMAS J. VILSACK
6 20 Governor
Text: HF02361 Text: HF02363 Text: HF02300 - HF02399 Text: HF Index Bills and Amendments: General Index Bill History: General Index
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