SB428: Congenital Anomalies Reporting and Education System; secure system to be provided.
Be it enacted by the General Assembly of Virginia:
1. That §§ 32.1-69.1 and 32.1-69.2 of the Code of Virginia are amended and reenacted as follows:
§ 32.1-69.1. Virginia Congenital Anomalies Reporting and Education System.
A. In order to collect data to evaluate the possible causes of
birth defects, improve the diagnosis and treatment of birth defects and
establish a mechanism for informing the parents of children identified as
having birth defects and their physicians about the health resources available
to aid such children, the Commissioner shall establish and maintain a Virginia
Congenital Anomalies Reporting and Education System using data from birth,
fetal death, and death certificates filed with the State Registrar
of Vital Records and data obtained from hospital medical records. The chief
administrative officer of every hospital, as defined in § 32.1-123, shall make
or cause to be made a report to the Commissioner of any person under two years
of age diagnosed as having a congenital anomaly. This report shall
include information on the parent's service in Vietnam, the duration of the
service and possible exposure to Agent Orange through its development, testing
or use. The Commissioner may appoint an advisory committee to
assist in the design and implementation of this reporting and education system
with representation from relevant groups including, but not limited to,
physicians, geneticists, personnel of appropriate state agencies, persons with
disabilities and the parents of children with disabilities.
B. The Commissioner shall establish
the Virginia Congenital Anomalies Reporting and Education System as a secure
system, which may include
online data entry, that protects the confidentiality
of data and information for which reporting is required. At
a minimum, data collected shall include, but not be limited to, the
following: (i) the infant's first and last name, date of birth,
gender, state of residence, birth hospital, physician's name, date
of admission, date of discharge or transfer, and diagnosis; (ii) the
first and last names of the infant's mother and father; (iii)
the first and last name of the primary contact
person for the infant; and
(iv)
data pertaining to birth defects reported
by hospitals and derived from
birth, fetal death, and death certificates issued
by the State Registrar of Vital Records and such
other sources as may be authorized
by the Commissioner. All
persons required to report
birth defects or otherwise authorized to access
the system by the Commissioner,
pursuant to this section, shall comply
with the federal
Department of Health and Human Services regulations relating to privacy of the
electronic transmission of data and protected
health information promulgated by the United States
Department of Health and Human Services as required by the Health Insurance
Portability and Accountability Act (HIPAA) (42 U.S.C. §
1320d et seq.), and
§§ 2.2-3705.5,
32.1-69.2, and 32.1-127.1:03, pertaining
to the privacy of health records. The Commissioner,
as he deems necessary to facilitate the
follow-up of infants whose data and health record information have been entered into the system, may
authorize the integration
or linking of the Virginia Congenital Anomalies Reporting and
Education System with other
Department of Health population-based surveillance systems. In
addition, to minimize
duplication and ensure accuracy during data entry, the
Commissioner may designate such existing
data and information that may be viewed by hospitals and
other medical facilities required to report
birth defect data to the system. With the assistance of the
advisory committee, the Board shall promulgate such regulations as may be
necessary to implement this reporting and education system. These regulations
may include determinations of specific genetic disorders to be monitored, the
scope of the information to be collected, appropriate mechanisms for follow-up,
relationships between the reporting and education system and other agencies and
mechanisms for review and evaluation of the activities of the system. The
reporting and education system may collect the name, address, sex, race, and
any other information, determined to be pertinent by the Board, regarding
persons reported to have birth defects.
§ 32.1-69.2. Confidentiality of records; publication; authority of Commissioner to contact parents and physicians.
The Commissioner and all other persons to whom data is submitted pursuant to § 32.1-69.1 shall keep such information confidential. For the purpose of only complying with the provisions of § 32.1-69.1, hospitals, medical facilities, and other persons required to report birth defects to the Virginia Congenital Anomalies Reporting and Education System and provide patient follow-up may view personally identifiable information in the system, as approved by the Commissioner and upon receipt by the Commissioner of sworn affirmation from each such person that the confidentiality of the information will be preserved. No publication of information shall be made except in the form of statistical or other studies which do not identify individuals. However, the Commissioner may contact the parents of children identified as having birth defects and their physicians to collect relevant data and to provide them with information about available public and private health care resources.
