Genetic testing and occupational illness: the role of “lay experts”
Genetic tests, it has been claimed, have a number of potential uses in the field of occupational health and safety. They include screening asymptomatic individuals to reveal whether the individual has specific gene variants that have been associated with increased risk of developing health problems as a result of exposure to particular substances or processes in the workplace.
However, it is important to remain sceptical about the actual predictive power of such genetic tests, particularly those claiming to identify relative risks of developing diseases whose causation is complex, at least partly environmental, and poorly understand—that is, most diseases. It is also important to be wary of the possibility that, nonetheless, such genetic tests will come to be used by powerful social actors in defence of their interests. This is illustrated by the case of the Burlington Northern Santa Fe Railway, which administered a genetic test to workers without their consent in an attempt to deflect a claim for compensation and medical treatment for carpal-tunnel syndrome.
The consequences of the introduction of new healthcare technologies
In light of this, how should we decide whether or under what conditions genetic testing for increased susceptibility to workplace hazards should be permitted? The factors typically taken into account when a new technology is evaluated for use in a healthcare system are the technology’s accuracy or efficacy, its safety, and its cost. Professional bioethicists may recommend guidelines for ethical use. Although technologies always operate in particular social contexts, relevant aspects of these contexts are typically not taken into account.
To understand what the effects of introducing a new technology will be, it is necessary to consider not only the technical capabilities of the technology and its cost, but also the context in which it will be used. While technical, medical and accounting experts are drawn upon to evaluate technical capabilities and cost, important knowledge of context may be found among people who have experience of the relevant context, rather than expertise in or experience with the technology itself.
Eliciting relevant knowledge : the importance of lay expertise
A research project carried out in New Zealand sought to identify such potential “lay experts” in relation to genetic testing for susceptibility to occupational illness. In New Zealand, compensation and rehabilitation for occupational illness and all accidents are the responsibility of the Accident Compensation Corporation. We asked: how would genetic testing interact with that socio-political context? In answering this question, it is important to go beyond formal rules to attempt to gain insights into actual everyday practice.
People with extensive experience of dealing with ACC were approached in order to gather information on how ACC operates in practice. Most claimants claim for medical treatment for injuries caused by accidents; their interactions with ACC tend to be brief and satisfactory. For those attempting to gain compensation and rehabilitation for workplace-induced illness, the experience is both more prolonged and less positive. It is these people who would be most affected by genetic susceptibility testing.
Interviews with a range of such claimants highlighted several aspects of ACC practice that would, in conjunction with the use of genetic susceptibility testing, constitute new or exacerbated hazards for claimants. First, claimants’ experiences indicate that ACC is currently unable to protect claimants’ confidential medical information. Mistakes are frequently made in the filing and circulation of personal information—which, if genetic susceptibility testing were adopted, would include the results of those tests.
Second, claimants noted that many attempts to gain compensation and rehabilitation founder on the insistence by ACC that anyone claiming occupationally induced illness be able to demonstrate that, on a population basis, those who work under similar conditions are statistically significantly more likely to contract the illness than those who do not. (A small number of illness/occupation relationships are exempt from this requirement.) As adequate epidemiological research is lacking in many cases, this works against many claimants. Under these conditions, a positive result from genetic susceptibility testing could not be used by claimants as evidence that their condition is likely to be caused by the workplace hazard involved, because the epidemiological hurdle would still need to be surmounted.
Can genetic testing benefit to the workers?
Finally, interviews revealed the situation of vulnerability in which such claimants find themselves, as a result of sharp disparities of power and resources. We heard many experiences of ACC drawing on its resources to send claimants to different doctors (in one case, nineteen different doctors) until it received the opinion that the illness was not work-related. In order to challenge these and other ACC practices and decisions, claimants need to use their own resources to pay for legal representation in the courts, which is beyond the means of most. In addition, claimants find that the stress of such processes exacerbates their ill-health. For these reasons, most do not challenge decisions they believe to be incorrect and unjust. The claimants expected that genetic testing would be used and interpreted by ACC to deny them compensation and that any technical possibility that genetic testing may help them demonstrate the validity of their claim would be undone by the social necessity of mobilising resources to challenge ACC in the courts.
If we want to understand the potential implications of adopting a new technology, it is essential to consider the socio-political context in which the technology would be implemented. People with direct experience of that context have important knowledge to contribute.
|Based on :||Goven, Joanna. (2008) Assessing genetic testing: Who are the “lay experts”? Health Policy 85: 1-18.|
|Author :||Joanna Goven, Ph.D.|
Draper, E. (1991) Risky business: Genetic testing and exclusionary practices in the hazardous workplace. Cambridge University Press.
Schulte P. A., Lomax G. (2003) Assessment of the scientific basis for genetic testing of railroad workers with carpal tunnel syndrome. Journal of Occupational and Environmental Medicine 45:592–600.
Willis, E. (2002) Public health and the "new genetics": Balancing individual and collective outcomes. Critical Public Health 12, 2: 139-151.