Senate Bill No. 672
(By Senators Helmick, Fanning, Boley, Prezioso, Ross and
Anderson)
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[Introduced February 18, 2002; referred to the Committee
on Health and Human Resources; and then to the Committee on
Finance.]
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A BILL to amend chapter sixteen of the code of West Virginia, one
thousand nine hundred thirty-one, as amended, by adding
thereto a new article, designated article forty, relating to
the establishment and implementation of a statewide birth
defects information system by the commissioner of the bureau
for public health.
Be it enacted by the Legislature of West Virginia:
That chapter sixteen of the code of West Virginia, one
thousand nine hundred thirty-one, as amended, be amended by adding
thereto a new article, designated article forty, to read as
follows:
ARTICLE 40. STATEWIDE BIRTH DEFECTS INFORMATION SYSTEM.
§16-40-1. Definitions.
As used in this article:
(1) "Commissioner" means the commissioner of the bureau for
public health.
(2) "Freestanding birthing center" means any health care
facility in which births routinely occur, regardless of whether the
facility is located on the campus of another health care facility,
and which is not licensed under article five-b of this chapter.
(3) "Hospital" means a hospital licensed under the provisions
of article five-b of this chapter.
(4) "Nurse-midwife" means an individual authorized under
article fifteen, chapter thirty of this code, to practice
nurse-midwifery.
(5) "Physician" means an individual authorized under article
three or fourteen, chapter thirty of this code, to practice
medicine and surgery or osteopathic medicine and surgery.
§16-40-2. Establishment and implementation of statewide birth
defects information system.
(a) The commissioner shall establish and implement a statewide
birth defects information system for the collection of information
concerning congenital anomalies, stillbirths and abnormal
conditions of newborns.
(b) The commissioner may require each physician,
nurse-midwife, hospital and freestanding birthing center to report
to the system information concerning all patients under five years
of age with a primary diagnosis of a congenital anomaly or abnormal condition. The commissioner may not require a hospital,
freestanding birthing center, nurse-midwife or physician to report
to the system any information that is required to be reported to
the commissioner or the bureau for public health under another
provision of this code.
(c) On request, each physician, nurse-midwife, hospital and
freestanding birthing center shall give the commissioner or
authorized employees of the bureau access to the medical records of
any patient described in subsection (b) of this section. The
bureau shall pay the costs of copying any medical records pursuant
to this section.
(d) A physician, nurse-midwife, hospital or freestanding
birthing center that provides information to the system under
subsection (b) of this section is not subject to criminal or civil
liability for providing the information.
§16-40-3. Purposes of system.
The birth defects information system may be used for all of
the following purposes:
(1) To identify and describe congenital anomalies, stillbirths
and abnormal conditions of newborns;
(2) To detect trends and epidemics in congenital anomalies,
stillbirths and abnormal conditions of newborns;
(3) To quantify morbidity and mortality of congenital
anomalies and abnormal conditions of newborns;
(4) To stimulate epidemiological research regarding congenital anomalies, stillbirths and abnormal conditions of newborns;
(5) To identify risk factors for congenital anomalies,
stillbirths and abnormal conditions of newborns;
(6) To facilitate intervention in and prevention of congenital
anomalies, stillbirths and abnormal conditions of newborns;
(7) To facilitate access to treatment for congenital anomalies
and abnormal conditions of newborns;
(8) To inform and educate the public about congenital
anomalies, stillbirths and abnormal conditions of newborns.
§16-40-4. Confidentiality of information.
(a) Except as provided in this section, records received and
information assembled by the birth defects information system
pursuant to section two of this article are confidential medical
records.
(b) (1) The commissioner may use information assembled by the
system to notify parents, guardians and custodians of children with
congenital anomalies or abnormal conditions of medical care and
other services available for the child and family.
(2) The commissioner may disclose information assembled by the
system with the written consent of the parent or legal guardian of
the child who is the subject of the information.
(c) (1) Access to information assembled by the system is
limited to the following persons and government entities:
(A) The commissioner;
(B) Authorized employees of the bureau; and
(C) Qualified persons or government entities that are engaged
in demographic, epidemiological or similar studies related to
health and health care provision.
(2) The commissioner shall give a person or government entity
described in subparagraph (C), subdivision (1) of this subsection
access to the system only if the person or a representative of the
person or government entity signs an agreement to maintain the
system's confidentiality.
(3) The commissioner shall maintain a record of all persons
and government entities given access to the information in the
system. The record shall include all of the following information:
(A) The name of the person who authorized access to the
system;
(B) The name, title and organizational affiliation of the
person or government entity given access to the system;
(C) The dates the person or government entity was given access
to the system; and
(D) The specific purpose for which the person or government
entity intends to use the information.
(4) The record maintained pursuant to subdivision (3) of this
subsection is a public record, as defined in chapter twenty-nine-b
of this code.
(5) A person who violates an agreement described in subdivision (2) of this subsection shall be denied further access
to confidential information maintained by the commissioner.
(d) The commissioner may disclose information assembled by the
system in summary, statistical or other form that does not identify
particular individuals or individual sources of information.
§16-40-5. Parent or legal guardian may require removal of
information concerning child from system.
(a) As used in this section, "local board of health" means a
local board of health established under the provisions of article
two of this chapter.
(b) A child's parent or legal guardian who wants information
concerning the child removed from the birth defects information
system shall request from the local board of health or the child's
physician a form prepared by the commissioner. On request, a local
board of health or physician shall provide the form to the child's
parent or legal guardian. The individual providing the form shall
discuss with the child's parent or legal guardian the information
contained in the system. If the child's parent or legal guardian
signs the form, the local board of health or physician shall
forward it to the commissioner. On receipt of the signed form, the
commissioner shall remove from the system any information that
identifies the child.
§16-40-6. Advisory council.
(a) Not later than thirty days after the effective date of
this article, the commissioner shall appoint a council to advise on
the establishment and implementation of the birth defects
information system.
(b) The council shall include, at a minimum, persons
representing each of the following interests:
(1) Obstetrics and gynecology;
(2) Pediatrics;
(3) Genetics;
(4) Epidemiology;
(5) Biostatistics;
(6) Hospital administration;
(7) The department of education;
(8) Parents of children with congenital anomalies or abnormal
conditions;
(9) The march of dimes West Virginia state chapter; and
(10) The public.
(c) (1) Not later than thirty days after the initial
appointments are made under subsection (b) of this section, the
commissioner shall convene the first meeting of the council. In
consultation with and with the approval of the council, the
commissioner shall appoint, at the first meeting of the council,
the chairperson and vice-chairperson of the council from among the members of the council. The chairperson may call additional
meetings as the chairperson considers appropriate.
(2) The council may establish rules of procedure as necessary
to facilitate the council's orderly conduct of business.
(3) Council members serve without compensation but, to the
extent funds are available, shall be reimbursed for their actual
and necessary expenses incurred in the performance of their duties.
(d) The council shall recommend to the commissioner a list of
congenital anomalies and abnormal conditions of newborns to be
reported to the system.
§16-40-7. Rules.
Not later than one hundred eighty days after the effective
date of this article, the commissioner shall, in consultation with
the council created under section six of this article, propose
rules for legislative approval in accordance with the provisions of
article three, chapter twenty-nine-a of this code, to do all of the
following:
(1) Implement the birth defects information system;
(2) Specify the types of congenital anomalies and abnormal
conditions of newborns to be reported to the system under section
two of this article;
(3) Establish reporting requirements for information
concerning diagnosed congenital anomalies and abnormal conditions of newborns;
(4) Establish standards that are required to be met by persons
or government entities that seek access to the system; and
(5) Establish a form for use by parents or legal guardians who
seek to have information regarding their children removed from the
system and a method of distributing the form to local boards of
health and to physicians. The method of distribution must include
making the form available on the internet.
§16-40-8. Reports by commissioner.
Prior to the first day of January, three years after the date
a birth defects information system is implemented pursuant to this
article, and by the first day of January of each year after that,
the commissioner shall prepare a report regarding the birth defects
information system. The council created under section six of this
article shall, not later than two years after the date a birth
defects information system is implemented, specify the information
the commissioner is to include in each report. The commissioner
shall file the report with the governor and the joint committee on
government and finance.
NOTE: The purpose of this bill is to require
the establishment
and implementation of statewide birth defects information system by
the Commissioner of the Bureau for Public Health.
This article is new; therefore, strike-throughs and
underscoring have been omitted.