ABSTRACT
Genetic testing in the workplace holds the promise of improving worker health but also raises ethical, legal, and social issues. In considering such testing, it is critical to understand the perspectives of workers, who are most directly affected by it, and occupational health professionals, who are often directly involved in its implementation. Therefore, a series of focus groups of unionized workers (n=25) and occupational medicine physicians (n=23) was conducted. The results demonstrated strikingly different perspectives of workers and physicians in several key areas, including the goals and appropriateness of genetic testing, and methods to minimize its risks. In general, workers were guided by a profound mistrust of the employer, physician, and government, while physicians were guided primarily by scientific and medical concerns, and, in many cases, by the business concerns distrusted by the workers.
Subject(s)
Attitude of Health Personnel , Genetic Testing/ethics , Genetic Testing/legislation & jurisprudence , Occupational Medicine/ethics , Occupational Medicine/legislation & jurisprudence , Physicians/psychology , Workplace , Adult , Aged , Chi-Square Distribution , Female , Focus Groups , Humans , Labor Unions , Male , Middle AgedABSTRACT
We explored the advantages and disadvantages of using ethnic categories in genetic research. With the discovery that certain breast cancer gene mutations appeared to be more prevalent in Ashkenazi Jews, breast cancer researchers moved their focus from high-risk families to ethnicity. The concept of Ashkenazi Jews as genetically unique, a legacy of Tay-Sachs disease research and a particular reading of history, shaped this new approach even as methodological imprecision and new genetic and historical research challenged it. Our findings cast doubt on the accuracy and desirability of linking ethnic groups to genetic disease. Such linkages exaggerate genetic differences among ethnic groups and lead to unequal access to testing and therapy.
Subject(s)
Breast Neoplasms/ethnology , Breast Neoplasms/genetics , Genetic Predisposition to Disease/ethnology , Genetic Research , Genetics, Population , Jews/genetics , Social Identification , Female , Founder Effect , Genes, BRCA1 , Genes, BRCA2 , Genetic Testing , Humans , Interviews as Topic , Jews/classification , Judaism , Mutation , Research Personnel , Tay-Sachs Disease/ethnology , Tay-Sachs Disease/geneticsABSTRACT
With the completion of the Human Genome Project, it is likely that genetic testing for susceptibility to a wide range of diseases will increase in society. One venue for such increased testing is likely to be the workplace as employers attempt to protect workers from unhealthy gene-environment interactions, improve productivity, and control escalating health care costs. Past and recent examples of genetic testing in the workplace raise serious concerns that such testing could pose a significant threat to workers' privacy, autonomy, and dignity. Thus, defining the ethically, legally, and socially appropriate and inappropriate uses of genetic testing in the workplace presents a major challenge for occupational health professionals in the years ahead.