Rules, Regulations, Policies and Operating Procedures
Our success as a team relies on working together as a cohesive team, which includes abiding by sets of rules and regulations. Please consult these resources to gain a better understanding of your role on our task force. The rules have been set in place to benefit all parties involved.
Our primary goals as a team include:
To provide the structure through which comprehensive genetic health care services, laboratory services and surveillance will be developed and implemented as an integral component of the state's health care system.
To assure the provision of statewide genetics education in order to promote health and prevent disease.
To develop policies and programs that assure availability of and access to quality genetic health care and laboratory services.
A comprehensive strategy is outlined in our State Genetics Plan.
We want to make sure you have the information that you need to successfully do your job and avoid privacy or regulatory breeches.
Our program is funded and regulated through multiple sections of Iowa Code. Listed below are applicable sections to our daily operations as staff of the program. Please be familiar with them to ensure best practice and compliance.
SFY 2016 Schedule
Current Agenda and Meeting Materials
Research Project Requests
Working with practitioners and educational institutions to establish best practices is an important part of our mission. While we have the data, experts are able to interpret that data through the lens of a practitioner. That being said, research requests need to be carefully considered before collaboration can occur. Any request that you may receive for research projects should go through the established process. The CCID’s policy is:
- Present the formal written request to members of the Congenital and Inherited Disorders Advisory Committee (CIDAC), who vote to recommend approval or denial of the request.
- The chair of the CIDAC submits a letter to the director of the Iowa Department of Public Health with the recommendation.
- The director presents the request and the CIDAC recommendation to the State Board of Health, which renders a decision to approve or deny the request.
See a complete description of the policy for use of blood spots here.
Genetic Information Nondiscrimination Act
The Genetic Information Nondiscrimination Act (GINA) is a federal law that prohibits discrimination in health coverage and employment based on genetic information.
Due to the sensitive nature of the data that our team is collecting, being up-to-date on the Health Insurance Portability and Accountability Act (HIPAA) regulations is important. Laboratory, follow-up and health department personnel may request additional patient and physician information to ensure that a newborn receives a metabolic screen or that a newborn with abnormal screening results receives confirmatory testing and any necessary treatment. The Privacy Rule of HIPAA permits disclosures of personal health information without individual authorization to these programs.
The following are position statements from the Attorney General’s Office on the HIPAA Privacy Rule and the release of medical information to these programs.
Iowa Registry for Congenital and Inherited Disorders
Iowa Newborn Metabolic Screening Program
More information on HIPAA: