Final Progress Report: Developing Ethical Practices for Genetics Testing in the Workplace

Laura Roberts, MD ; Teddy Warner, PhD

关键词: COMPUTERS;    DECISION MAKING;    EDUCATIONAL FACILITIES;    ETHICAL ASPECTS;    GENETICS;    INFORMATION CENTERS;    LANL;    MEDICINE;    PERSONNEL;    PROGRAMMING;    PROGRESS REPORT;    RECOMMENDATIONS;    SANDIA NATIONAL LABORATORIES;    TESTING;   

DOI  :  10.2172/941418
RP-ID  :  DOE/FG/63772- Final Report
PID  :  OSTI ID: 941418
Others  :  TRN: US201111%%676

美国|英语

来源: SciTech Connect

【 摘 要 】

Our multidisciplinary research team for this project involved collaboration between the Department of Psychiatry and Behavioral Medicine at the Medical College of Wisconsin (MCW) and the Department of Family and Community Medicine at the University of New Mexico Health Sciences Center (UNM HSC). Our research team in Wisconsin was led by Laura Roberts, M.D., Principal Investigator, and included Scott Helberg, MLS (Project Coordinator), Kate Green Hammond, Ph.D. (Consultant), Krisy Edenharder (Research Coordinator), and Mark Talatzko (Research Assistant). Our New Mexico-based team was led by Teddy Warner, Ph.D., Co-Principal Investigator and UNM Site Principal Investigator, and included Suzanne Roybal (Project Assistant), Darlyn Mabon (Project Assistant), Kate Green Hammond, PhD (Senior Research Scientist on the UNM team from 2004 until January, 2007), and Paulette Christopher (Research Assistant). In addition, computer technical and web support for the web-based survey conducted on a secure server at the University of New Mexico was provided by Kevin Wiley and Kim Hagen of the Systems and Programming Team of the Health Sciences Center Library and Information Center. We stated 3 aims in the grant proposal: (1) To collect web survey reports of the ethical perspectives, concerns, preferences and decision-making related to genetic testing using surveys from employees at: (a) Los Alamos National Laboratory (LANL); (b) Sandia National Laboratories (SNL); and (c) the University of New Mexico Health Sciences Center (UNMHSC); (2) To perform an extensive literature search and the extant survey data to develop evidence-based policy recommendations for ethically sound genetic testing associated with research and occupational health activities in the workplace; and, (3) To host a conference at the Medical College of Wisconsin to provide employers, workers, health professionals, researchers, the public, and the media an opportunity to consider ethical issues involved in genetic testing in the context of the workplace.