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April 27, 1994

Developing the Clinical Application of Genetic Diagnosis: The Role of NIDDK

Author Affiliations

National Institute of Diabetes and Digestive and Kidney Disease National Institutes of Health Bethesda, Md

JAMA. 1994;271(16):1240. doi:10.1001/jama.1994.03510400026022

To the Editor.  —The article by Drs Wilfond and Nolan1 is inaccurate with respect to the role of the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) in cystic fibrosis (CF) carrier screening. Having supported CF gene identification, the NIDDK felt an obligation to ensure responsible use of the information. In response to concerns about screening the population prematurely, the NIDDK convened a distinguished panel 6 months after the gene identification to discuss the principles and preconditions for carrier screening. The recommendations of this group are widely accepted and have been reiterated in subsequent position papers by the American Society of Human Genetics (ASHG). The NIDDK response was timely and appropriate. The statement by Wilfond and Nolan, "Thus, almost by default, ASHG was placed in the position of responding to... and organizing an NIH [National Institutes of Health] workshop to develop policy guidelines," is incorrect. The NIH

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