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Genomics Day 2005: Genomics Day 2005: Public Health Genomics at CDC

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Group 4: Public Health Research and Practice

Educating beryllium workers about genetic information
McCanlies EC, Schuler C, Kreiss K, Weston A .
Health Effects Laboratory Division, NIOSH, CDC

Genetic research among beryllium-exposed workers has shown that the HLA-DPB1 Glu69 polymorphism is associated with both beryllium sensitization and chronic beryllium disease. Workers who obtain personal genetic information in the context of this genetic research may be at risk for employment and insurance discrimination. NIOSH is concerned about the potential risks faced by beryllium workers who obtain their personal genetic information and has made educating workers about their risks and benefits a priority. Precautions taken to protect workers participating in NIOSH research include a CDC assurance of confidentiality that the individuals' genetic results can only be used for beryllium-related research; a consent form indicating that personal genetic results can only be obtained by the individual; informational meetings; and a two-step process for obtaining results. Since 1998 1,182 current and former workers have participated in our research; 73 (6.2%) have taken the first step to request their results, and 32 (2.7%) have completed the process and actually obtained their results. While the need to protect worker participants' genetic results must remain paramount, genetic research holds promise for understanding the molecular mechanisms of sensitization and CBD, for developing animal models, exposure standards to protect all workers, and better treatments and interventions.