Chris MacDonald, Saint Mary's
University (chrismac@ethicsweb.ca)
Bryn Williams-Jones,
University of Cambridge (bryn@genethics.ca)
The rapid advances made in genetic research and technology over the last few decades have led to a host of important advances in the detection (and perhaps soon the treatment) of genetic conditions and diseases. These developments have also raised ethical concerns about how resulting technologies will be implemented, and about how implementation will affect individuals and communities. One particular set of concerns surrounds the use of genetic testing in the workplace. Though not yet common, workplace genetic testing is bound to become a real option for employers as genetic technologies improve.
Genetic testing comes in two forms: screening and monitoring. Genetic monitoring (generally supported by labour advocates) detects genetic abnormalities potentially caused by exposure to workplace toxins. It serves as an alert to hazards in the workplace, similar in principle to radiation detection badges. By contrast, genetic screening (our focus here), is used to detect either the potential for hereditary disease or susceptibility to workplace toxins. Genetic testing could in principle be used for pre-employment testing, employee placement, and risk avoidance -- all useful tools for employers.
Given that workplace genetic testing is a technology both full of promise and fraught with ethical peril, we suggest an approach that allows for the possibility of workplace genetic testing, but that attempts to minimize its negative impacts. We propose a set of criteria, the satisfaction of which would make it permissible for employers to offer genetic testing to workers.
Requiring workers to submit to genetic testing is significantly more problematic morally. Forced testing would constitute an invasion of privacy, and expose the worker -- on a non-voluntary basis -- to a range of poorly understood risks. Thus it may not be possible to identify circumstances in which such a requirement would be ethically permissible. We do not attempt that task here. As a result, we restrict our discussion to the search for conditions under which it would be permissible for employers to offer employees the opportunity to be tested.
We contend that it is permissible to offer genetic testing to employees if the following 6 requirements are satisfied.
'Permissive' requirements:
A genetic test (for a specific condition) must be available which is highly specific and sensitive and offers an acceptably low incidence of both false positives and false negatives; such a test must test for a gene that is sufficiently penetrant for the test result to have some important health implication.
Testing should be carried out by an independent lab, and results of genetic tests should be given to workers directly, either by a geneticist or a genetic counsellor; test results should be held confidential, and revealed to the employer only at the employee's request;
Pre- and post-test genetic counselling must be available from a qualified health professional, and paid for by the employer, regardless of the outcome of the test;
The gene being tested for must not be prominently associated with an identifiable and historically disadvantaged group;
Where relevant, the employer must guarantee continued access to group insurance;
The employer must ensure that if the employee chooses to reveal that she has tested positive, suitable policies are in place to ensure a reasonable degree of job security.
If these 6 criteria are met, then genetic testing can be offered to employees, and the key ethical pitfalls associated with workplace genetic testing will have been avoided
. Nevertheless, we do not feel that even meeting these criteria can justify requiring employees to submit to genetic testing.Further, in some cases, testing might be so beneficial that an employer comes under an obligation to offer, and pay for, testing. Even if a test is thought to be highly beneficial, it must of course still avoid the pitfalls discussed above. We argue that it is ethically mandatory for an employer to offer genetic testing to employees if conditions 1 through 6 above are satisfied, and if, in addition, 2 prescriptive conditions are met.
'Prescriptive' requirements:
Knowing their status with regard to the genetic characteristic in question can reasonably be expected to influence at least some employees' decision to remain in their current position;
The cost of the test is "reasonable" (e.g., is similar to the costs of other insured medical services, or other normal workplace benefits).
We think that the possibility of an obligation to offer testing to employees -- and the financial burden that could imply -- goes hand in hand with the possibility of offering genetic testing to employees, and the risks such testing would imply for them. In considering whether they favour a world in which employees may be tested, employers should also consider whether they also favour a world in which they may be obligated to offer testing.
We recognize that both the permissive requirements (1-6) and the prescriptive requirements (7-8) listed above will be controversial. We have intentionally 'set the bar high,' since we believe that the ethical problems associated with workplace genetic testing are considerable: no company should rush into offering such testing without careful forethought. We look forward to suggested amendments to our list of criteria. In particular, we hope our work will stimulate greater discussion of workplace genetic testing (and other biotechnological issues) within the business ethics literature, as well as greater attention from bioethicists to the ways in which genetic technologies will be perceived and approached within the business community.
1This page is based upon MacDonald, C. & Williams-Jones, B. 2002. “Ethics and Genetics: Susceptibility Testing in the Workplace” Journal of Business Ethics, Vol. 35(3), p. 235-241. [abstract & bibliography]
This page is administered by Chris MacDonald (chrismac@ethicsweb.ca)
