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2005 - 2006 LEGISLATURE
March 7, 2006 - Introduced by Representatives Townsend, Gunderson,
Montgomery, Musser
and Sheridan, cosponsored by Senator Roessler.
Referred to Committee on Public Health.
AB1098,1,8 1An Act to renumber and amend 253.12 (1) (b); to amend 69.03 (12), 69.20 (2)
2(a) (intro.), 69.20 (3) (b) 3., 69.20 (3) (c), 69.20 (3) (d), 253.12 (1) (a) (intro.),
3253.12 (1) (a) 1., 253.12 (2) (a) (intro.), 253.12 (2) (am), 253.12 (2) (b), 253.12 (2)
4(e), 253.12 (3) (a) 1. (intro.), 253.12 (3) (a) 1. c., 253.12 (3) (c), 253.12 (4) (a),
5253.12 (5) (a) 1., 253.12 (5) (a) 2. and 253.12 (5) (a) 4.; to repeal and recreate
6253.12 (2) (d); and to create 69.20 (2) (a) 3., 253.12 (1) (e), 253.12 (1) (f), 253.12
7(1) (g), 253.12 (2) (a) 3., 253.12 (2) (a) 4., 253.12 (5) (c) and 253.12 (5m) of the
8statutes; relating to: the birth defect prevention and surveillance system.
Analysis by the Legislative Reference Bureau
Under the birth defect prevention and surveillance system (system) in current
law, pediatric specialty clinics and physicians are required to report to the
Department of Health and Family Services (DHFS) any birth defects of infants or
children who are diagnosed or treated in the clinics or by the physicians. A "birth
defect" is defined as a structural deformation, disruption, or dysplasia or a genetic,
inherited, or biochemical disease that occurs prior to or at birth and that requires
medical or surgical intervention or interferes with normal growth and development.
An "infant or child" is defined as a human being from birth to the age of two years.
DHFS may not require a pediatric specialty clinic or physician to report the name

of a reported infant or child if the parent or guardian of the infant or child refuses
in writing to consent to the release of the name or address of the infant or child.
Also under current law, information that is contained in a vital record and is
designated as being collected for statistical and medical use or statistical use only or
that involves the birth of a child to an unmarried mother may be disclosed only in
certain instances. One instance is disclosure of this information, under an interstate
cooperation agreement, from the vital record of the resident of another state or a
resident of this state born in another state, for use by the state registrar in compiling
statistics. Another instance is disclosure of statistical or medical information for use
in the conduct of official duties of a federal agency, a Wisconsin governmental agency,
or the agency of a county, city, town, or village. In addition, hospitals and funeral
directors must provide and the state registrar must accept reports of certain fetal
deaths. Before destroying these reports, the state registrar may record the reports'
information for use in medical research and use the information to compile statistics.
Lastly, under current law, DHFS must establish and maintain an up-to-date
registry that documents the diagnosis in this state of any infant or child who has a
birth defect. Among the information that DHFS is required to include in the registry
is information that will facilitate the development of primary preventive strategies
to decrease the occurrence of birth defects without increasing abortions.
This bill changes the process by which the parent or guardian of an infant or
child may decide not to consent to the release of the 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 bill specifies a process by which, using the
DHFS form, the parent or guardian of an infant or child may effect withdrawal of
consent to the release of identifying information about the infant or child, and
requires that, if consent to the release is withdrawn, DHFS remove the information
from the system. DHFS must prescribe and distribute to pediatric specialty clinics
and local health departments the form for these purposes by January 1, 2007.
The bill requires the division of DHFS that deals with vital statistics to report
to the system 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. In addition, the bill 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 bill authorizes DHFS to contract with an entity to perform the development
of primary preventive strategies to decrease the occurrence of birth defects as
information to be included in the birth defect registry.
The bill also permits the state registrar to record information from reports of
certain fetal deaths for use in research conducted under the system.

Lastly, the bill includes stillborn humans, as defined in the bill, under the
requirements of the system, expands the definition of "birth defect" to include
structural malformations, and makes other minor changes.
For further information see the state and local fiscal estimate, which will be
printed as an appendix to this bill.
The people of the state of Wisconsin, represented in senate and assembly, do
enact as follows:
AB1098, s. 1 1Section 1. 69.03 (12) of the statutes is amended to read:
AB1098,3,62 69.03 (12) Accept fetal death reports under s. 69.18 (1) (e). The state registrar
3may record the information on the reports for use in medical research , including
4research conducted under s. 253.12 (5) (b),
and may use the information to compile
5statistics. After recording the information on a fetal death report, the state registrar
6shall destroy the report.
AB1098, s. 2 7Section 2. 69.20 (2) (a) (intro.) of the statutes is amended to read:
AB1098,3,138 69.20 (2) (a) (intro.) Except as provided under sub. (3), information Information
9in the part of a certificate of birth or divorce or annulment or a marriage document
10that is designated on the form as being collected for statistical or medical and
11statistical use only and information in the part of a death certificate that is
12designated on the form as being collected as statistical-use-only information under
13s. 69.18 (1m) (c) may not be disclosed to any person except the following:
AB1098, s. 3 14Section 3. 69.20 (2) (a) 3. of the statutes is created to read:
AB1098,3,1515 69.20 (2) (a) 3. As provided under sub. (3).
AB1098, s. 4 16Section 4. 69.20 (3) (b) 3. of the statutes is amended to read:
AB1098,4,717 69.20 (3) (b) 3. The information is from the vital record of a registrant who is
18a resident of another state or who was born in another state and is transmitted to
19the office responsible for keeping the vital statistics in such state under an interstate

1cooperation agreement which requires that the information be used for statistical
2and administrative purposes only and which provides for the retention and
3disposition of such copies. If under such an agreement the state registrar receives
4information from an office responsible for keeping the vital statistics in another
5state, the state registrar may not use the information for any purpose except for the
6compilation of statistics and, if agreed to by the other state, in meeting requirements
7for reporting under s. 253.12 (2) (a) 3
.
AB1098, s. 5 8Section 5. 69.20 (3) (c) of the statutes is amended to read:
AB1098,4,179 69.20 (3) (c) Notwithstanding sub. (2), a A local registrar may disclose
10information on a birth certificate or issue a copy of the certificate to a local health
11department, as defined in s. 250.01 (4), for health or demographic research or a public
12health program if the local health department pays the copying costs and if the birth
13of the registrant occurred within the boundaries of the political subdivision served
14by the local health department or the registrant is a resident of the political
15subdivision. The local health department may not disclose any information from any
16copy which it receives under this paragraph to any person and shall destroy the copy
17no later than one year after receipt.
AB1098, s. 6 18Section 6. 69.20 (3) (d) of the statutes is amended to read:
AB1098,4,2519 69.20 (3) (d) Subject to par. (f), the state or a local registrar may disclose
20information from the vital record of a specified registrant, except information under
21sub. (2) (a),
to a federal agency, to any agency of the government of this state, or to
22any agency of a county, city, town, or village if the agency requests the information
23for use in the conduct of its official duties, except that the state registrar may disclose
24information under sub. (2) (a) only in order to meet requirements for reporting under
25s. 253.12 (2) (a) 3
.
AB1098, s. 7
1Section 7. 253.12 (1) (a) (intro.) of the statutes is amended to read:
AB1098,5,52 253.12 (1) (a) (intro.) "Birth defect" means any of the following conditions
3affecting a stillborn human or an infant or child that occurs prior to or at birth and
4that requires medical or surgical intervention or interferes with normal growth and
5development:
AB1098, s. 8 6Section 8. 253.12 (1) (a) 1. of the statutes is amended to read:
AB1098,5,87 253.12 (1) (a) 1. A structural malformation, deformation, disruption, or
8dysplasia.
AB1098, s. 9 9Section 9. 253.12 (1) (b) of the statutes is renumbered 253.12 (1) (cm) and
10amended to read:
AB1098,5,1411 253.12 (1) (cm) "Pediatric specialty clinic" means a clinic that is located in a
12hospital or is a freestanding clinic,
the primary purpose of which is to provide
13pediatric specialty diagnostic, counseling and medical management services to
14persons with birth defects by a physician subspecialist.
AB1098, s. 10 15Section 10. 253.12 (1) (e) of the statutes is created to read:
AB1098,5,1816 253.12 (1) (e) "Research" means a systematic study through scientific inquiry
17for the purpose of expanding a field of knowledge, including environmental or
18epidemiological research or special studies.
AB1098, s. 11 19Section 11. 253.12 (1) (f) of the statutes is created to read:
AB1098,5,2120 253.12 (1) (f) "Stillbirth" means a birth for which a fetal death report is required
21under s. 69.18 (1) (e) 1.
AB1098, s. 12 22Section 12. 253.12 (1) (g) of the statutes is created to read:
AB1098,5,2423 253.12 (1) (g) "Stillborn human" means a human whose birth resulted in
24stillbirth.
AB1098, s. 13 25Section 13. 253.12 (2) (a) (intro.) of the statutes is amended to read:
AB1098,6,3
1253.12 (2) (a) (intro.) Except as provided in par. (b), all of the following shall
2report in the manner prescribed by the department under sub. (3) (a) 3. a birth defect
3in a stillborn human or an infant or child:
AB1098, s. 14 4Section 14. 253.12 (2) (a) 3. of the statutes is created to read:
AB1098,6,75 253.12 (2) (a) 3. The division of the department that deals with vital statistics,
6with respect to the information received under s. 69.20 (3) (b) 3. or available under
7s. 69.20 (3) (d).
AB1098, s. 15 8Section 15. 253.12 (2) (a) 4. of the statutes is created to read:
AB1098,6,109 253.12 (2) (a) 4. The entity under contract under s. 153.05 (2m) (a), with respect
10to public use data files under s. 153.46 (1) (b).
AB1098, s. 16 11Section 16. 253.12 (2) (am) of the statutes is amended to read:
AB1098,6,1412 253.12 (2) (am) Any hospital in which a birth defect is diagnosed in a stillborn
13human or
an infant or child or treatment is provided to the infant or child may report
14the birth defect in the manner prescribed by the department under sub. (3) (a) 3.
AB1098, s. 17 15Section 17. 253.12 (2) (b) of the statutes is amended to read:
AB1098,6,1916 253.12 (2) (b) No person specified under par. (a) need report under par. (a) if
17that person knows that another person specified under par. (a) or (am) has already
18reported to the department the required information with respect to the same birth
19defect of the same stillborn human or infant or child.
AB1098, s. 18 20Section 18. 253.12 (2) (d) of the statutes is repealed and recreated to read:
AB1098,7,221 253.12 (2) (d) If the parent or guardian of a stillborn human or an infant or child
22for whom a report is made under par. (a) decides, after having been informed by a
23physician or a physician's designee of the intent of the system under this section, not
24to consent to the release of identifying information concerning the stillborn human
25or infant or child and signs the form specified in sub. (5) (c), the department may not

1require a person specified under par. (a) 1., 2., or 3. to report information identifying
2the stillborn human or infant or child.
AB1098, s. 19 3Section 19. 253.12 (2) (e) of the statutes is amended to read:
AB1098,7,64 253.12 (2) (e) If the address of an infant or child or the place of delivery of a
5stillborn human
for whom a report is made under par. (a) is included in the report,
6the department shall encode the address to refer to the same geographical location.
AB1098, s. 20 7Section 20. 253.12 (3) (a) 1. (intro.) of the statutes is amended to read:
AB1098,7,128 253.12 (3) (a) 1. (intro.) Establish and maintain an up-to-date registry that
9documents the diagnosis in this state of any stillborn human or infant or child who
10has a birth defect, regardless of the residence of the infant or child or place of delivery
11of the stillborn human
. The department shall include in the registry information
12that will facilitate all of the following:
AB1098, s. 21 13Section 21. 253.12 (3) (a) 1. c. of the statutes is amended to read:
AB1098,7,1614 253.12 (3) (a) 1. c. Development of primary preventive strategies to decrease
15the occurrence of birth defects without increasing abortions. The department may
16contract with an entity to perform the development required under this subd. 1. c.
AB1098, s. 22 17Section 22. 253.12 (3) (c) of the statutes is amended to read:
AB1098,7,2018 253.12 (3) (c) The department shall, not more than 10 years from the date of
19receipt of a report under sub. (2), delete from any file of the department the name of
20a stillborn human or an infant or child that is contained in the report.
AB1098, s. 23 21Section 23. 253.12 (4) (a) of the statutes is amended to read:
AB1098,8,522 253.12 (4) (a) Make recommendations to the department regarding the
23establishment of a registry that documents the diagnosis in the state of a stillborn
24human or
an infant or child who has a birth defect, as required under sub. (3) (a) 1.
25and regarding the rules that the department is required to promulgate under sub.

1(3) (a) 2. and 3. on the birth defects to be reported under sub. (2) and on the general
2content and format of the report under sub. (2) and procedures for submitting the
3report. The council shall also make recommendations regarding the content of a
4report that, because of the application of sub. (2) (d), does not contain the name of the
5subject of the report.
AB1098, s. 24 6Section 24. 253.12 (5) (a) 1. of the statutes is amended to read:
AB1098,8,87 253.12 (5) (a) 1. The parent or guardian of a stillborn human or an infant or
8child for whom a report is made under sub. (2).
AB1098, s. 25 9Section 25. 253.12 (5) (a) 2. of the statutes is amended to read:
AB1098,8,1810 253.12 (5) (a) 2. A local health officer, a local birth-to-3 coordinator or an
11agency under contract with the department to administer the children with special
12health care needs program, upon receipt of a written request and informed written
13consent from the parent or guardian of the infant or child
under the requirements
14of subs. (2) (d) and (5m)
. The local health officer may disclose information received
15under this subdivision only to the extent necessary to render and coordinate services
16and follow-up care for the infant or child or to conduct a health, demographic or
17epidemiological investigation. The local health officer shall destroy all information
18received under this subdivision within one year after receiving it.
AB1098, s. 26 19Section 26. 253.12 (5) (a) 4. of the statutes is amended to read:
AB1098,9,620 253.12 (5) (a) 4. A representative of a federal or state agency upon written
21request and to the extent that the information is necessary to perform a legally
22authorized function of that agency, including investigation of causes, mortality,
23methods of prevention and early intervention, treatment or care of birth defects,
24associated diseases or disabilities. The information may not include the name or
25address of an infant or child or the place of delivery of a stillborn human with a

1condition reported under sub. (2). The department shall notify the parent or
2guardian of a stillborn human or an infant or child about whom information is
3released under this subdivision, of the release. The representative of the federal or
4state agency may disclose information received under this paragraph only as
5necessary to perform the legally authorized function of that agency for which the
6information was requested.
AB1098, s. 27 7Section 27. 253.12 (5) (c) of the statutes is created to read:
AB1098,9,118 253.12 (5) (c) By January 1, 2007, the department shall prescribe and
9distribute to pediatric speciality clinics and local health departments copies of a form
10to be used by the parent or guardian of a stillborn human or an infant or child for
11whom a report is made under sub. (2) (a) in indicating any of the following:
AB1098,9,1312 1. Refusal under sub. (2) (d) by the parent or guardian to consent to the release
13of identifying information concerning the stillborn human or infant or child.
AB1098,9,1614 2. The decision under sub. (5m) by the parent or guardian to remove from the
15system any identifying information entered for the stillborn human or infant or
16child.
AB1098, s. 28 17Section 28. 253.12 (5m) of the statutes is created to read:
AB1098,9,2518 253.12 (5m) Removal of identifying information. If the parent or guardian
19of a stillborn human or an infant or child for whom a report is made under sub. (2)
20(a) decides to withdraw consent to the release of identifying information concerning
21the stillborn human or infant or child, the parent or guardian may request from the
22local health department or the stillborn human's or infant's or child's physician the
23form specified in sub. (5) (c). If the parent or guardian decides, after having been
24informed by the stillborn human's or infant's or child's physician or physician's
25designee of the information contained in the system under this section, and signs the

1form, the local health department, physician, or physician's designee shall forward
2the form to the division of the department that deals with public health. On receipt
3of the signed form, the department shall remove from the system under this section
4any information identifying the stillborn human or infant or child.
AB1098,10,55 (End)
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