Listed below are the applicable sections of Iowa Code and Administrative Rules as they relate to the Center for Congenital and Inherited Disorders programs.
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The following are applicable to the Center for Congenital and Inherited Disorders:
Research Project Requests
Occasionally, the Center for Congenital and Inherited Disorders (CCID) receives requests from outside institutions to utilize newborn or maternal screening information or blood spots for research purposes. The CCID's policy is to present the formal written request to members of the Congenital and Inherited Disorders Advisory Committee (CIDAC), who then vote to recommend approval or denial of the request. The chair of CIDAC then submits a letter to the director of the Iowa Department of Public Health, summarizing the recommendation. The director then presents the request and the CIDAC recommendation to the State Board of Health, which renders a decision to approve or deny the request.
The Genetic Information Nondiscrimination Act of 2008 (P.L. 110-233, 122 Stat. 881), also referred to as GINA, is a new Federal law that prohibits discrimination in health coverage and employment based on genetic information. President Bush signed the act into law on May 21, 2008. The section of the law relating to health coverage (Title I) generally will take effect between May 22, 2009, and May 21, 2010.
HIPAA--It's the Law...
The Iowa Registry for Congenital and Inherited Disorders and the Iowa Neonatal Metabolic Screening Program perform public health activities for the purpose of preventing or controlling disease. The Iowa Registry for Congenital and Inherited Disorders collects individual health information to perform birth defect surveillance and research. The Iowa Neonatal Metabolic Screening Program provides comprehensive newborn screening services for hereditary and congenital disorders. 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 the Health Insurance Portability and Accountability Act (HIPAA) permits disclosures of personal health information without individual authorization to these programs. The Attorney General’s Office has issued position statements 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
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