Genetic susceptibility testing for beryllium: worker knowledge, beliefs, and attitudes.
Silver Spring, MD: The Center to Protect Workers' Rights, 2009 Feb; :1-70
INTRODUCTION: Beryllium is the first industrial toxicant for which a scientifically valid genetic susceptibility test may soon be available. The gold standard for a screening test is the positive predictive value (PPV). For the Glu69 marker it ranges from about 12 to 43 percent. Certain rare alleles have been identified with PPV's ranging up to 100 percent. Title II of the Genetic Information Nondiscrimation Act of 2008 (GINAct) prohibits employers' use of genetic information in employment decisions. The prohibition extends to unions and joint labor-management entities. None of these actors may "request, require or purchase" genetic information. In this project we sought to gain insight into workers' knowledge, beliefs and attitudes on the subject of genetic susceptibility testing for beryllium. METHODS: Five focus groups were held with 30 current and former workers and nine of their family members between June 2007 and April 2008 in New Mexico and Tennessee. Workers were employed at the following Department of Energy (DOE) facilities: Los Alamos National Laboratory (LANL), Sandia National Laboratory (SNL), Oak Ridge National Laboratory (ORNL) and the Y-12 National Security Complex. The facilitator used the following guiding questions: 1. Should workplace testing be offered to all workers or just some workers? Should it be optional or mandatory? 2. How would individuals benefit from taking a genetic susceptibility test? What burdens would they face as a result of taking the test? 3. What factors would increase or decrease your likelihood of pursuing testing? 4. How would you respond to a positive test result? To a negative test result? RESULTS: Knowledge and Beliefs. LANL participants' knowledge was rooted in personal experience with health outcomes and exposure scenarios. Questions raised by participants were the layperson's version of those being pursued by scientific researchers. Differences in knowledge and beliefs between LANL and ORNL/Y-12, where a beryllium support group meets regularly, could be helpful in developing worker education programs on genetic testing. Some misconceptions involved the distinction between genotoxicity and heritability, as well as the role of smoking in chronic beryllium disease (CBD). Benefits. Overwhelmingly, the perceived benefits of a positive test result were related to the principle of individual autonomy. Participants also said they would use the beryllium exposure. Burdens. The major burden cited by participants was the potential abuse of genetic information by employers. As GINA takes effect, perennial aspects of the work and social environments in nuclear communities will surely persist, such as the inadequacy of sanctions under health and safety laws and contractor non-compliance. Not even a hypothetical voluntary program with up-front promises of confidentiality was sufficient to fully allay workers' privacy concerns. Voluntariness. The vast majority of responses were in favor of voluntary testing. Concern for "civil liberties" was cited in opposition to mandatory testing. Sponsorship and Venue. Overwhelmingly, participants' comments focused on ensuring financial and political independence of the testing entity from the employer. Involvement of representatives of outside groups was suggested. At Oak Ridge it was suggested that a worker's private physician could administer the test and help the worker's family interpret the result. Family Issues. A heritable susceptibility marker would have implications for a worker's family. Family members figured prominently as key figures to whom workers would disclose their test result. Family contact exposure via contaminated work clothes was widely recognized as hazardous. Dissatisfaction was expressed over the lack of free LPT testing for family members through DOE's former worker programs Voluntary Self-Disclosure. Divergent views were expressed on disclosing a test result to the employer. Risk Numbers. Does a positive genetic test tell you something you don't already know? We premised this question on a 5% current known risk of disease; after a positive genetic test, it goes up to 14 percent. Only one participant, a union official, fully accepted the premises of the question and provided an unambiguous answer: "That's so important." Numerical estimates of risk from the various lines of scientific evidence may need to be processed in a group setting. MPRB. Some of the most vexatious issues of a voluntary genetic susceptibility program for beryllium have already been encountered under DOE's beryllium standard which provides "medical removal protection benefits" for workers who are LPT-positive. Even so, some younger workers at Oak Ridge/Y-12 are eschewing the LPT to avoid potential stigmatization and prolonged joblessness. Insurability. Threats to individuals' insurability were the subject of much comment and strongly held opinions. Beryllium workers are vulnerable when they change employers and when they apply for supplemental insurance in retirement. DISCUSSION AND CONCLUSIONS: Those concerned with the responsible use of a genetic test for susceptibility to beryllium may now be enjoying a calm interlude. Commercialization could interfere with the phased approach to translational research which consists of needs assessment, intervention and longitudinal follow-up of outcomes. We evaluate three possible venues for a voluntary, confidential genetic testing program: 1) Primary care physicians. Workers in our focus groups trusted their family doctor. But a strategy centered on primary care practitioners may be overly ambitious. 2) Chest physicians. Pulmonary specialists near DOE facilities already have relevant expertise. But as specialists they are more likely than family physicians to have financial ties to the employer's medical program. 3) Former worker programs funded extramurally by DOE. Many of these teams include occupational physicians and staff who are committed to protecting the rights of DOE employees. They are well-situated to keep abreast of the science on genetic markers as well as strategies for tailoring genetic counseling protocols to the work environment. The files of participants in medical surveillance projects are smaller than patient records in a private medical practice. Extensive privacy protections are in place. So a genetic test result is less likely to be inadvertently transmitted to anyone other than the worker. In a phased approach, the genetic susceptibility test could be made available first to former workers. These pilot programs could serve as the proving ground for educational programs and materials, as well as counseling. Former workers could be cultivated as leaders in later efforts to consider offering genetic testing on a voluntary, confidential basis to current and prospective workers. With research in molecular epidemiology and modeling ongoing, the test's PPV may increase in value. Should the PPV exceed 50 percent, there won't be many winning arguments standing in the way of commercial availability of a genetic test. A positive result would mean "more likely than not" the person will develop disease. Those concerned with protecting workers' rights currently have a window of opportunity to control genetic testing to ensure that, if it is used, then it will be used to the benefit, not the detriment, of workers and their families. RECOMMENDATIONS: Eleven recommendations for individuals and organizations concerned with workers' rights are made in this report.
Beryllium-compounds; Sensitivity-testing; Sensitization; Genes; Genetic-factors; Genetics; Workers; Behavior; Attitude; Group-behavior; Group-dynamics; Families; Genotoxicity; Heredity; Decision-making; Diagnostic-techniques; Diagnostic-tests; Employee-health; Health-care;
Medical-screening; Biological-material; Biological-monitoring; Physicians; Surveillance-programs
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Genetic Susceptibility Testing for Beryllium: Worker Knowledge, Beliefs, and Attitudes
Center to Protect Workers' Rights