The supervisor of the central abuse registry shall be
responsible for determining whether a person requesting child abuse information
is conducting bona fide research, whether the research will further the
official duties and functions of the central abuse registry, and whether
identified information is essential to the research design. A bona fide
research design is one which shows evidence of a good-faith, academically
objective and sincere intent to add to the body of knowledge about child abuse.
To make this determination, the central abuse registry shall require the person
to submit credentials and the research design. Additional criteria for approval
of a research project may include whether the research involves contact with
subjects of child abuse information, and whether contact with department
personnel is required to complete the research design. If it is determined that
the research will involve use of identified information, the central abuse
registry shall also determine under what circumstances and in what format the
information is to be used and shall execute an agreement with the researcher
which will enable the researcher to obtain access to identified information on
subjects of child abuse investigations, as an agent of the central abuse
registry. The department will require the researcher to assume costs incurred
by the department in obtaining or providing information for research purposes.
The department shall keep a public record of persons conducting this
research.
(1)
Child abuse
factors. For purposes of conducting research pursuant to Iowa Code
sections
235A.15
and
235A.23, official duties
and functions of the central abuse registry shall include analysis or
identification of child abuse factors in at least one of the following areas:
a. Causes of abuse-victim, parent and
perpetrator characteristics, types of abuse, and correlations to family and
environmental factors.
b. Effects
of abuse-immediate and long-term effects of abuse on the individual child
victim, the child's family and the perpetrator, in areas such as family
functioning, foster placement, emotional and medical problems, and criminal
activity; and effects of abuse on the community and society in
general.
c. Prevention of
abuse-intervention, prevention and treatment strategies.
d. Treatment of abuse-impact of service
delivery upon recidivism and maintenance of the family unit.
e. Reporting of abuse-mandatory and
permissive reporter characteristics, training needs, and perception of the
department's protective services to children and families.
f. Identification of strengths and weaknesses
in statute, policy or practice concerning child abuse services.
(2)
Guidelines.
To be accepted by the central abuse registry, a research proposal originating
outside the
department shall meet the following guidelines:
a. The proposal shall meet the criteria
listed above as "official duties and functions" of the central abuse
registry.
b. The research shall be
conducted by a competent researcher, evidenced by affiliation with a recognized
human services agency, government body, or academic, social work or medical
facility. The researcher shall demonstrate an ability to conduct nonbiased
research and present findings in a professional and responsible manner which
will benefit the department in providing protective services to children and
families.
c. The proposed research
shall not unduly interfere with the ongoing duties and responsibilities of
department staff
d. When the
proposed research includes contact with subjects of child abuse information,
the research design shall reflect a plan for initial subject contact by the
department, which includes the following:
(1)
Subjects shall be informed in writing of their right to refuse to participate
in the research.
(2) Subjects shall
receive written assurance that their participation in the research will not
affect eligibility for services.
(3) Department staff shall be advised of
research goals and procedures prior to contact with subjects, in order to
answer questions which may arise.
(4) Subjects shall receive written assurance
that when identifying information is released by the central abuse registry to
research staff, the information will remain confidential and that all child
abuse information will be deidentified prior to publication of the research
findings.
(3)
Approval procedures. Procedures for approval of a research
proposal are conducted as follows:
a. The
supervisor of the central abuse registry shall designate a person to be the
single point of contact (SPOC) for all research proposals requesting child
abuse information or involving department staff who provide child protective
services. All proposals shall be routed to the SPOC at the Division of Adult,
Children and Family Services, Department of Human Services, 1305 E. Walnut
Street, Des Moines, Iowa 50319-0114.
b. Having received a research proposal, the
SPOC shall log the date the proposal was received and other identifying
information about the researcher and the research design and shall convene a
research advisory committee to review the proposal. This committee may consist
of:
(1) The unit supervisor of the child and
dependent adult abuse registry, when applicable.
(2) The unit managers for the programs
addressed by the research proposal.
(3) The research specialist.
(4) Representatives from the field, including
a service area manager or designee and one representative from a service area,
appointed by the service area manager, if a specific service area is
involved.
(5) A representative from
the department's division of data management, when the proposal involves use of
one of the department's computerized data systems.
(6) A representative of the attorney
general's office, when the proposal involves legal questions or
issues.
(7) Other persons whom the
SPOC may designate to assist in the review.
c. The SPOC is responsible for ensuring that
advisory committee members receive copies of the research proposal.
d. The advisory committee may meet in person
or by teleconference.
e. The
researcher may, at the discretion of the SPOC, be provided an opportunity to
address the advisory committee concerning the research proposal and answer
questions about the research design.
f.The committee shall determine the value of
the proposed research and formulate recommendations for acceptance of the
proposal (with conditions as necessary) or rejection of the proposal (with
rationale for the rejection). These recommendations shall be submitted to the
SPOC.
g. The SPOC shall transmit
the committee's recommendations, with additional comments and recommendations,
as needed, to the division administrators for the divisions involved.
h. The division administrators shall review
committee recommendations and submit the research proposal to the director or
designee for final approval.
i.
After review by the director, the proposal shall be returned to the SPOC, who
shall notify the researcher of the director's decision, which decision shall be
final.
j. If the research proposal
is approved, the SPOC shall prepare a written research agreement with the
researcher which provides:
(1) The purpose of
the research.
(2) The research
design or methodology.
(3) The
control of research findings and publication rights of all parties, including
the deidentification of child abuse information prior to publication.
(4) The duties of all parties in conducting
the research.
(5) The transfer of
funds, if applicable.
k.
The SPOC shall be responsible for securing written approval of the research
agreement from the attorney general's office, applicable division
administrators, and the researcher
l. The SPOC shall be responsible for
maintaining the research agreement throughout the research project and renewing
or modifying the agreement when necessary.
