A workshop, co-sponsored by the Centers for Disease Control and Prevention (CDC) and the National Human Genome Research Institute (NHGRI), was held on March 3, 1997 to examine the clinical, ethical, legal and social implications of discovery of the gene for hereditary hemochromatosis and the possibility of widespread population-based testing for the disease.
An article detailing the conclusions resulting from this workshop was published in the July 8, 1998 issue of JAMA (Wylie Burke, et al. "Hereditary Hemochromatosis: Gene Discovery and Its Implications for Population-Based Screening." JAMA. 1998;280:172-178). These conclusions include:
In December 1998, the National Heart, Lung, and Blood Institute (NHLBI) and the NHGRI released a Request for Proposals to Study Iron Overload and Hereditary Hemochromatosis [nhlbi.nih.gov]. This RFP was designed to solicit proposals to carry out an epidemiological study of the prevalence, genetic and environmental determinants, and potential clinical, personal and societal impact of iron overload and hereditary hemochromatosis (HH) in a muilti-center, multi-ethnic, primary care based sample of approximately 100,000 adults. This is a five year, $30 million project.
Contracts to carry out this project were awarded in early FY00 to five field centers, a coordinating center, and a central lab.
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Last Updated: October 1, 2012