AB185-ASA3,1,7 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(d), 253.12 (2) (e), 253.12 (3) (a) 1. (intro.), 253.12 (3) (c), 253.12 (4) (a), 253.12
5(5) (a) 1. and 253.12 (5) (a) 4.; and to create 69.20 (2) (a) 3., 253.12 (1) (e), 253.12
6(2) (a) 3., 253.12 (2) (a) 4. and 253.12 (5) (b) 5m. of the statutes; relating to: the
7birth 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.
Currently, 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.
Also under current law, DHFS may release confidential information that
identifies the subject of a birth defect to a person proposing to conduct research if
DHFS approves the person's application to conduct the research, the research is to
study birth defects surveillance and prevention, DHFS determines that any direct
contact with a family meets certain requirements, and the person agrees in writing
to certain requirements.
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 substitute amendment includes stillbirths, as defined in the substitute
amendment, under the requirements of the system and expands the definition of
"birth defect" to include structural malformations.
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 also 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.
Lastly, the substitute amendment permits the state registrar to record
information from reports of certain fetal deaths for use in research conducted under
the system.
The people of the state of Wisconsin, represented in senate and assembly, do
enact as follows:
AB185-ASA3, s. 1 1Section 1. 69.03 (12) of the statutes is amended to read:
AB185-ASA3,3,62 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.
AB185-ASA3, s. 2 7Section 2. 69.20 (2) (a) (intro.) of the statutes is amended to read:
AB185-ASA3,3,138 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:
AB185-ASA3, s. 3 14Section 3. 69.20 (2) (a) 3. of the statutes is created to read:
AB185-ASA3,3,1515 69.20 (2) (a) 3. As provided under sub. (3).
AB185-ASA3, s. 4 16Section 4. 69.20 (3) (b) 3. of the statutes is amended to read:
AB185-ASA3,4,817 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

1the office responsible for keeping the vital statistics in such state under an interstate
2cooperation agreement which requires that the information be used for statistical
3and administrative purposes only and which provides for the retention and
4disposition of such copies. If under such an agreement the state registrar receives
5information from an office responsible for keeping the vital statistics in another
6state, the state registrar may not use the information for any purpose except for the
7compilation of statistics and, if agreed to by the other state, in meeting requirements
8for reporting under s. 253.12 (2) (a) 3
.
AB185-ASA3, s. 5 9Section 5. 69.20 (3) (c) of the statutes is amended to read:
AB185-ASA3,4,1810 69.20 (3) (c) Notwithstanding sub. (2), a A local registrar may disclose
11information on a birth certificate or issue a copy of the certificate to a local health
12department, as defined in s. 250.01 (4), for health or demographic research or a public
13health program if the local health department pays the copying costs and if the birth
14of the registrant occurred within the boundaries of the political subdivision served
15by the local health department or the registrant is a resident of the political
16subdivision. The local health department may not disclose any information from any
17copy which it receives under this paragraph to any person and shall destroy the copy
18no later than one year after receipt.
AB185-ASA3, s. 6 19Section 6. 69.20 (3) (d) of the statutes is amended to read:
AB185-ASA3,4,2420 69.20 (3) (d) Subject to par. (f), the state or a local registrar may disclose
21information from the vital record of a specified registrant, except information under
22sub. (2) (a),
to a federal agency, to any agency of the government of this state, or to
23any agency of a county, city, town, or village if the agency requests the information
24for use in the conduct of its official duties.
AB185-ASA3, s. 7 25Section 7. 253.12 (1) (a) (intro.) of the statutes is amended to read:
AB185-ASA3,5,4
1253.12 (1) (a) (intro.) "Birth defect" means any of the following conditions
2affecting a stillbirth or an infant or child that occurs prior to or at birth and that
3requires medical or surgical intervention or interferes with normal growth and
4development:
AB185-ASA3, s. 8 5Section 8. 253.12 (1) (a) 1. of the statutes is amended to read:
AB185-ASA3,5,76 253.12 (1) (a) 1. A structural malformation, deformation, disruption, or
7dysplasia.
AB185-ASA3, s. 9 8Section 9. 253.12 (1) (b) of the statutes is renumbered 253.12 (1) (cm) and
9amended to read:
AB185-ASA3,5,1310 253.12 (1) (cm) "Pediatric specialty clinic" means a clinic that is located in a
11hospital or is a freestanding clinic,
the primary purpose of which is to provide
12pediatric specialty diagnostic, counseling and medical management services to
13persons with birth defects by a physician subspecialist.
AB185-ASA3, s. 10 14Section 10. 253.12 (1) (e) of the statutes is created to read:
AB185-ASA3,5,1715 253.12 (1) (e) "Research" means a systematic study through scientific inquiry
16for the purpose of expanding a field of knowledge, including environmental or
17epidemiological research or special studies.
AB185-ASA3, s. 11 18Section 11. 253.12 (2) (a) (intro.) of the statutes is amended to read:
AB185-ASA3,5,2119 253.12 (2) (a) (intro.) Except as provided in par. (b), all of the following shall
20report in the manner prescribed by the department under sub. (3) (a) 3. a birth defect
21in a stillbirth or an infant or child:
AB185-ASA3, s. 12 22Section 12. 253.12 (2) (a) 3. of the statutes is created to read:
AB185-ASA3,6,523 253.12 (2) (a) 3. The division of the department that deals with vital statistics,
24with respect to the information received under s. 69.20 (3) (b) 3. or available under
25s. 69.20 (3) (d). If a report is made under this subdivision and the report is not

1confirmed by a report made by another reporting entity, the department shall remove
2from the registry under sub. (3) all information that would identify the stillbirth,
3infant, or child before releasing the information to another party under sub. (5) (b),
4other than the address of the infant or child or place of delivery of the stillbirth that
5the department has encoded to refer to the same geographical location.
AB185-ASA3, s. 13 6Section 13. 253.12 (2) (a) 4. of the statutes is created to read:
AB185-ASA3,6,87 253.12 (2) (a) 4. The entity under contract under s. 153.05 (2m) (a), with respect
8to public use data files under s. 153.46 (1) (b).
AB185-ASA3, s. 14 9Section 14. 253.12 (2) (am) of the statutes is amended to read:
AB185-ASA3,6,1210 253.12 (2) (am) Any hospital in which a birth defect is diagnosed in a stillbirth
11or
an infant or child or treatment is provided to the infant or child may report the
12birth defect in the manner prescribed by the department under sub. (3) (a) 3.
AB185-ASA3, s. 15 13Section 15. 253.12 (2) (b) of the statutes is amended to read:
AB185-ASA3,6,1714 253.12 (2) (b) No person specified under par. (a) need report under par. (a) if
15that person knows that another person specified under par. (a) or (am) has already
16reported to the department the required information with respect to the same birth
17defect of the same stillbirth or infant or child.
AB185-ASA3, s. 16 18Section 16. 253.12 (2) (d) of the statutes is amended to read:
AB185-ASA3,6,2219 253.12 (2) (d) The department may not require a person specified under par.
20(a) 1. or, 2., or 3. to report the name of an infant or child for whom a report is made
21under par. (a) if the parent or guardian of the infant or child refuses to consent in
22writing to the release of the name or address of the infant or child.
AB185-ASA3, s. 17 23Section 17. 253.12 (2) (e) of the statutes is amended to read:
AB185-ASA3,7,3
1253.12 (2) (e) If the address of an infant or child or the place of delivery of a
2stillbirth
for whom a report is made under par. (a) is included in the report, the
3department shall encode the address to refer to the same geographical location.
AB185-ASA3, s. 18 4Section 18. 253.12 (3) (a) 1. (intro.) of the statutes is amended to read:
AB185-ASA3,7,95 253.12 (3) (a) 1. (intro.) Establish and maintain an up-to-date registry that
6documents the diagnosis in this state of any stillbirth or infant or child who has a
7birth defect, regardless of the residence of the infant or child or place of delivery of
8the stillbirth
. The department shall include in the registry information that will
9facilitate all of the following:
AB185-ASA3, s. 19 10Section 19. 253.12 (3) (c) of the statutes is amended to read:
AB185-ASA3,7,1311 253.12 (3) (c) The department shall, not more than 10 years from the date of
12receipt of a report under sub. (2), delete from any file of the department the name of
13a stillbirth or an infant or child that is contained in the report.
AB185-ASA3, s. 20 14Section 20. 253.12 (4) (a) of the statutes is amended to read:
AB185-ASA3,7,2315 253.12 (4) (a) Make recommendations to the department regarding the
16establishment of a registry that documents the diagnosis in the state of a stillbirth
17or
an infant or child who has a birth defect, as required under sub. (3) (a) 1. and
18regarding the rules that the department is required to promulgate under sub. (3) (a)
192. and 3. on the birth defects to be reported under sub. (2) and on the general content
20and format of the report under sub. (2) and procedures for submitting the report. The
21council shall also make recommendations regarding the content of a report that,
22because of the application of sub. (2) (d), does not contain the name of the subject of
23the report.
AB185-ASA3, s. 21 24Section 21. 253.12 (5) (a) 1. of the statutes is amended to read:
AB185-ASA3,8,2
1253.12 (5) (a) 1. The parent or guardian of a stillbirth or an infant or child for
2whom a report is made under sub. (2).
AB185-ASA3, s. 22 3Section 22. 253.12 (5) (a) 4. of the statutes is amended to read:
AB185-ASA3,8,144 253.12 (5) (a) 4. A representative of a federal or state agency upon written
5request and to the extent that the information is necessary to perform a legally
6authorized function of that agency, including investigation of causes, mortality,
7methods of prevention and early intervention, treatment or care of birth defects,
8associated diseases or disabilities. The information may not include the name or
9address of an infant or child or the place of delivery of a stillbirth with a condition
10reported under sub. (2). The department shall notify the parent or guardian of a
11stillbirth or
an infant or child about whom information is released under this
12subdivision, of the release. The representative of the federal or state agency may
13disclose information received under this paragraph only as necessary to perform the
14legally authorized function of that agency for which the information was requested.
AB185-ASA3, s. 23 15Section 23. 253.12 (5) (b) 5m. of the statutes is created to read:
AB185-ASA3,8,1816 253.12 (5) (b) 5m. The person agrees in writing that the information provided
17will not be used by an insurer, as defined in s. 600.03 (27), to limit or deny health care
18coverage or a policy of life insurance to an individual.
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