Amendment ASA2-AB185

This substitute amendment changes the process by which the parent or guardian of a stillbirth, infant, or child may decide not to consent to the release of the stillbirth's, infant's, or child's identifying information, to require that a physician or physician's designee first inform the parent or guardian of the intent of the system and to require signature of the parent or guardian on a DHFS form. Further, the substitute amendment specifies a process by which, using the DHFS form, the parent or guardian of a stillbirth, infant, or child may effect withdrawal of consent to the release of identifying information about the stillbirth, infant, or child, and requires that, if consent to the release is withdrawn, DHFS remove the information from the system. DHFS must prescribe and periodically distribute to pediatric specialty clinics, hospitals in which deliveries are performed, and local health departments the form for these purposes, beginning July 1, 2009.

The substitute amendment requires the division of DHFS that deals with vital statistics to report to the system, for use in the registry, information that is contained in a vital record and is designated as being collected for statistical and medical use or statistical use only, including this type of information that is available under an interstate cooperation agreement, if this disclosure is agreed to by the other state. However, if this information is not confirmed by another reporting entity, DHFS must, before releasing the information to anyone who is proposing to conduct research, remove from the registry all information that would identify the stillbirth, infant, or child other than the address of the infant or child or place of delivery of the stillbirth that DHFS has encoded to refer to the same geographical location. In addition, the substitute amendment requires the entity that contracts with the Department of Administration for collecting, analyzing, and disseminating health care information of hospitals and ambulatory surgery centers to report to the system concerning birth defects as recorded in public use data files of hospitals and ambulatory surgery centers.

The substitute amendment requires that a person who is proposing to conduct research, to whom DHFS releases certain confidential birth defect information, agree in writing that the information will not be used by an insurer to limit or deny health care coverage or a policy of life insurance to an individual.

The substitute amendment also permits the state registrar to record information from reports of certain fetal deaths for use in research conducted under the system.

Lastly, the substitute amendment includes stillbirths, as defined in the substitute amendment, under the requirements of the system, expands the definition of "birth defect" to include structural malformations, and makes other minor changes.

The people of the state of Wisconsin, represented in senate and assembly, do enact as follows:

AB185-ASA2, s. 1 Section 1. 69.03 (12) of the statutes is amended to read:

AB185-ASA2,3,6 69.03 (12) Accept fetal death reports under s. 69.18 (1) (e). The state registrar may record the information on the reports for use in medical research , including research conducted under s. 253.12 (5) (b), and may use the information to compile statistics. After recording the information on a fetal death report, the state registrar shall destroy the report.

AB185-ASA2, s. 2 Section 2. 69.20 (2) (a) (intro.) of the statutes is amended to read:

AB185-ASA2,4,2 69.20 (2) (a) (intro.) Except as provided under sub. (3), information Information in the part of a certificate of birth or divorce or annulment or a marriage document that is designated on the form as being collected for statistical or medical and statistical use only and information in the part of a death certificate that is designated on the form as being collected as statistical-use-only information under s. 69.18 (1m) (c) may not be disclosed to any person except the following:

AB185-ASA2, s. 3 Section 3. 69.20 (2) (a) 3. of the statutes is created to read:

AB185-ASA2,4,4 69.20 (2) (a) 3. As provided under sub. (3).

AB185-ASA2, s. 4 Section 4. 69.20 (3) (b) 3. of the statutes is amended to read:

AB185-ASA2,4,15 69.20 (3) (b) 3. The information is from the vital record of a registrant who is a resident of another state or who was born in another state and is transmitted to the office responsible for keeping the vital statistics in such state under an interstate cooperation agreement which requires that the information be used for statistical and administrative purposes only and which provides for the retention and disposition of such copies. If under such an agreement the state registrar receives information from an office responsible for keeping the vital statistics in another state, the state registrar may not use the information for any purpose except for the compilation of statistics and, if agreed to by the other state, in meeting requirements for reporting under s. 253.12 (2) (a) 3.

AB185-ASA2, s. 5 Section 5. 69.20 (3) (c) of the statutes is amended to read:

AB185-ASA2,4,25 69.20 (3) (c) Notwithstanding sub. (2), a A local registrar may disclose information on a birth certificate or issue a copy of the certificate to a local health department, as defined in s. 250.01 (4), for health or demographic research or a public health program if the local health department pays the copying costs and if the birth of the registrant occurred within the boundaries of the political subdivision served by the local health department or the registrant is a resident of the political subdivision. The local health department may not disclose any information from any copy which it receives under this paragraph to any person and shall destroy the copy no later than one year after receipt.

AB185-ASA2, s. 6 Section 6. 69.20 (3) (d) of the statutes is amended to read:

AB185-ASA2,5,6 69.20 (3) (d) Subject to par. (f), the state or a local registrar may disclose information from the vital record of a specified registrant, except information under sub. (2) (a), to a federal agency, to any agency of the government of this state, or to any agency of a county, city, town, or village if the agency requests the information for use in the conduct of its official duties.

AB185-ASA2, s. 7 Section 7. 253.12 (1) (a) (intro.) of the statutes is amended to read:

AB185-ASA2,5,11 253.12 (1) (a) (intro.) "Birth defect" means any of the following conditions affecting a stillbirth or an infant or child that occurs prior to or at birth and that requires medical or surgical intervention or interferes with normal growth and development:

AB185-ASA2, s. 8 Section 8. 253.12 (1) (a) 1. of the statutes is amended to read:

AB185-ASA2,5,14 253.12 (1) (a) 1. A structural malformation, deformation, disruption, or dysplasia.

AB185-ASA2, s. 9 Section 9. 253.12 (1) (b) of the statutes is renumbered 253.12 (1) (cm) and amended to read:

AB185-ASA2,5,20 253.12 (1) (cm) "Pediatric specialty clinic" means a clinic that is located in a hospital or is a freestanding clinic, the primary purpose of which is to provide pediatric specialty diagnostic, counseling and medical management services to persons with birth defects by a physician subspecialist.

AB185-ASA2, s. 10 Section 10. 253.12 (1) (e) of the statutes is created to read:

AB185-ASA2,5,24 253.12 (1) (e) "Research" means a systematic study through scientific inquiry for the purpose of expanding a field of knowledge, including environmental or epidemiological research or special studies.

AB185-ASA2, s. 11 Section 11. 253.12 (2) (a) (intro.) of the statutes is amended to read:

AB185-ASA2,6,3 253.12 (2) (a) (intro.) Except as provided in par. (b), all of the following shall report in the manner prescribed by the department under sub. (3) (a) 3. a birth defect in a stillbirth or an infant or child:

AB185-ASA2, s. 12 Section 12. 253.12 (2) (a) 3. of the statutes is created to read:

AB185-ASA2,6,12 253.12 (2) (a) 3. The division of the department that deals with vital statistics, with respect to the information received under s. 69.20 (3) (b) 3. or available under s. 69.20 (3) (d). If a report is made under this subdivision and the report is not confirmed by a report made by another reporting entity, the department shall remove from the registry under sub. (3) all information that would identify the stillbirth, infant, or child before releasing the information to another party under sub. (5) (b), other than the address of the infant or child or place of delivery of the stillbirth that the department has encoded to refer to the same geographical location.

AB185-ASA2, s. 13 Section 13. 253.12 (2) (a) 4. of the statutes is created to read:

AB185-ASA2,6,15 253.12 (2) (a) 4. The entity under contract under s. 153.05 (2m) (a), with respect to public use data files under s. 153.46 (1) (b).

AB185-ASA2, s. 14 Section 14. 253.12 (2) (am) of the statutes is amended to read:

AB185-ASA2,6,19 253.12 (2) (am) Any hospital in which a birth defect is diagnosed in a stillbirth or an infant or child or treatment is provided to the infant or child may report the birth defect in the manner prescribed by the department under sub. (3) (a) 3.

AB185-ASA2, s. 15 Section 15. 253.12 (2) (b) of the statutes is amended to read:

AB185-ASA2,6,24 253.12 (2) (b) No person specified under par. (a) need report under par. (a) if that person knows that another person specified under par. (a) or (am) has already reported to the department the required information with respect to the same birth defect of the same stillbirth or infant or child.

AB185-ASA2, s. 16 Section 16. 253.12 (2) (d) of the statutes is repealed and recreated to read:

AB185-ASA2,7,7 253.12 (2) (d) If the parent or guardian of a stillbirth or an infant or child for whom a report is made under par. (a) decides, after having been informed by a physician or a physician's designee of the intent of the system under this section, not to consent to the release of identifying information concerning the stillbirth or infant or child and signs the form specified in sub. (5) (c), the department may not require a person specified under par. (a) 1., 2., or 3. to report information identifying the stillbirth or infant or child.

AB185-ASA2, s. 17 Section 17. 253.12 (2) (e) of the statutes is amended to read:

AB185-ASA2,7,11 253.12 (2) (e) If the address of an infant or child or the place of delivery of a stillbirth for whom a report is made under par. (a) is included in the report, the department shall encode the address to refer to the same geographical location.

AB185-ASA2, s. 18 Section 18. 253.12 (3) (a) 1. (intro.) of the statutes is amended to read:

AB185-ASA2,7,17 253.12 (3) (a) 1. (intro.) Establish and maintain an up-to-date registry that documents the diagnosis in this state of any stillbirth or infant or child who has a birth defect, regardless of the residence of the infant or child or place of delivery of the stillbirth. The department shall include in the registry information that will facilitate all of the following:

AB185-ASA2, s. 19 Section 19. 253.12 (3) (c) of the statutes is amended to read:

AB185-ASA2,7,21 253.12 (3) (c) The department shall, not more than 10 years from the date of receipt of a report under sub. (2), delete from any file of the department the name of a stillbirth or an infant or child that is contained in the report.

AB185-ASA2, s. 20 Section 20. 253.12 (4) (a) of the statutes is amended to read:

AB185-ASA2,8,6 253.12 (4) (a) Make recommendations to the department regarding the establishment of a registry that documents the diagnosis in the state of a stillbirth or an infant or child who has a birth defect, as required under sub. (3) (a) 1. and regarding the rules that the department is required to promulgate under sub. (3) (a) 2. and 3. on the birth defects to be reported under sub. (2) and on the general content and format of the report under sub. (2) and procedures for submitting the report. The council shall also make recommendations regarding the content of a report that, because of the application of sub. (2) (d), does not contain the name of the subject of the report.

AB185-ASA2, s. 21 Section 21. 253.12 (5) (a) 1. of the statutes is amended to read:

AB185-ASA2,8,9 253.12 (5) (a) 1. The parent or guardian of a stillbirth or an infant or child for whom a report is made under sub. (2).

AB185-ASA2, s. 22 Section 22. 253.12 (5) (a) 2. of the statutes is amended to read:

AB185-ASA2,8,19 253.12 (5) (a) 2. A local health officer, a local birth-to-3 coordinator or an agency under contract with the department to administer the children with special health care needs program, upon receipt of a written request and informed written consent from the parent or guardian of the infant or child under the requirements of subs. (2) (d) and (5m). The local health officer may disclose information received under this subdivision only to the extent necessary to render and coordinate services and follow-up care for the infant or child or to conduct a health, demographic or epidemiological investigation. The local health officer shall destroy all information received under this subdivision within one year after receiving it.

AB185-ASA2, s. 23 Section 23. 253.12 (5) (a) 4. of the statutes is amended to read:

AB185-ASA2,9,6 253.12 (5) (a) 4. A representative of a federal or state agency upon written request and to the extent that the information is necessary to perform a legally authorized function of that agency, including investigation of causes, mortality, methods of prevention and early intervention, treatment or care of birth defects, associated diseases or disabilities. The information may not include the name or address of an infant or child or the place of delivery of a stillbirth with a condition reported under sub. (2). The department shall notify the parent or guardian of a stillbirth or an infant or child about whom information is released under this subdivision, of the release. The representative of the federal or state agency may disclose information received under this paragraph only as necessary to perform the legally authorized function of that agency for which the information was requested.

AB185-ASA2, s. 24 Section 24. 253.12 (5) (b) 5m. of the statutes is created to read:

AB185-ASA2,9,10 253.12 (5) (b) 5m. The person agrees in writing that the information provided will not be used by an insurer, as defined in s. 600.03 (27), to limit or deny health care coverage or a policy of life insurance to an individual.

AB185-ASA2, s. 25 Section 25. 253.12 (5) (c) of the statutes is created to read:

AB185-ASA2,9,16 253.12 (5) (c) By July 1, 2009, the department shall prescribe and distribute, and periodically distribute thereafter, to pediatric speciality clinics, hospitals in which deliveries are performed, and local health departments copies of a form to be used by the parent or guardian of a stillbirth or an infant or child for whom a report is made under sub. (2) (a) in indicating any of the following:

AB185-ASA2,9,18 1. Refusal under sub. (2) (d) by the parent or guardian to consent to the release of identifying information concerning the stillbirth or infant or child.

AB185-ASA2,9,20 2. The decision under sub. (5m) by the parent or guardian to remove from the system any identifying information entered for the stillbirth or infant or child.

AB185-ASA2, s. 26 Section 26. 253.12 (5m) of the statutes is created to read:

AB185-ASA2,9,25 253.12 (5m) Removal of identifying information. If the parent or guardian of a stillbirth or an infant or child for whom a report is made under sub. (2) (a) decides to withdraw consent to the release of identifying information concerning the stillbirth or infant or child, the parent or guardian may request from the local health department or the stillbirth's or infant's or child's physician the form specified in sub. (5) (c). If the parent or guardian decides, after having been informed by the stillbirth's or infant's or child's physician or physician's designee of the information contained in the system under this section, and signs the form, the local health department, physician, or physician's designee shall forward the form to the division of the department that deals with public health. On receipt of the signed form, the department shall remove from the system under this section any information identifying the stillbirth or infant or child.

AB185-ASA2,10,9 (End)