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Erin McCanlies, PhD, HELD/BEB, National Institute for Occupational Safety and Health, 1095 Willowdale, Morgantown, WV 26505, 304-285-6132, EIM4@cdc.gov, Christine Schuler, PhD, Division of Respiratory Disease Studies, National Institute of Occupational Safety and Health, 1095 Willowdale, Morgantown, WV 26508, Kathleen Kreiss, MD, Division of Respiratory Disease Studies, National Institute for Occupational Safety and Health, 1095 Willowdale, Morgantown, WV 26505, and Ainsley Weston, PhD, HELD/TMBB, National Institute for Occupational Safety and Health, 1095 Willowdale Rd., Morgantown, WV 26505.
Genetic research among beryllium-exposed workers has shown that the HLA-DPB1Glu69 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.
Learning Objectives:
Keywords: Genetics, Workforce
Presenting author's disclosure statement:
I do not have any significant financial interest/arrangement or affiliation with any organization/institution whose products or services are being discussed in this session.