Markkula Center of Applied Ethics

Read My Genes:
Genetic Screening in the Workplace

By Claire Andre and Manuel Velasquez

Few employment practices have stirred as much controversy as employment testing. From psychological questionnaires to urine samples, the devices used by employers to screen, select, and place workers have been challenged by civil rights groups and courts alike. But none is likely to spark more debate than genetic tests. These tests can detect the presence of genetic abnormalities in healthy individuals that may place those individuals at increased risk for developing certain diseases. In the workplace, such tests can be used to screen job applicants and employees who, because of their genetic makeup, may be more likely to develop diseases if exposed to certain worksite substances, such as chemicals or radiation.

Research to date has identified about fifty genetic disorders thought to increase a person's susceptibility to the toxic or carcinogenic effects of environmental agents. Individuals with the sickle cell trait, for example, may be at increased risk for sickle cell anemia if exposed to carbon monoxide or cyanide. Exposure to lead or benzine can be especially hazardous to the health of people with the thalassemia gene.

Presently, few companies report using genetic tests; the tests currently available can identify only a small number of relatively rare diseases, are costly to perform, and difficult to administer. But advances in genetic research and technology, accelerated by the 15-year, $3 billion federally-funded Human Genome Project which aims to decode the genetic makeup of humans, are likely to soon make available simplified, less costly tests able to detect a wide range of common genetic disorders, including those not necessarily associated with worksite exposure, such as predisposition to heart disease, cancer, and manic depression. As such tests become available, it is anticipated that interest in testing will grow.

Genetic screening is often advocated as a means of significantly reducing the incidence of occupational disease. Employers can use information obtained from genetic testing to ensure that prospective or current employees are not placed in environments that might cause them harm. But critics of this emerging technology maintain that screening violates workers rights and increases racial and ethnic discrimination in the workplace, charges that take on added force with the availability of tests for traits not associated with work-related diseases. Should genetic screening be allowed in the workplace?

Those who support genetic screening claim that screening would benefit employees, employers, and society as a whole. According to one report, 390,000 workers contract disabling occupational diseases each year; 100,000 of these workers die. With the information obtained through genetic screening, workers could avoid work environments that would be hazardous to their health, sparing workers and their families the physical, emotional, and financial costs of disabling diseases and premature death.

Employers too would benefit from genetic screening. In 1981, the Bureau of labor statistics reported that occupational illness costs private sector employers 850,000 lost workdays. Litigation over illnesses associated with hazardous worksite substances also impose heavy costs on employers. By reducing occupational disease, genetic screening could reduce the costs of lowered productivity, excess absenteeism, and high employee turnover, as well as the cost associated with workers' compensation payments, health insurance,e and liability for occupational disease.

The lowered incidence of work-related diseases resulting from genetic screening would also benefit society as a whole by reducing the health care costs covered by Medicare and Medicaid, public assistance, and social security payments.

Supporters of screening also argue that, contrary to the critics' charges, genetic screening does not violate the rights of employees. Those job applicants or employees who object to being screened are free to forego testing and seek employment elsewhere. Furthermore, employers have an interest in maintaining a healthy and productive workforce and a legitimate right to adopt policies, such as genetic screening, that protect this interest. In fact, if an employer fails to test a high-risk worker who then develops a disease as a result of exposure to substances in the workplace, that employer could be held negligent. To protect their interests, then, employers should be free to screen such workers.

Still others defend genetic screening on the grounds that all individuals have a basic right not to be harmed, and employers thus have a duty to provide a safe workplace. In general, the safety of a workplace is ensured by an employer's compliance with regulations governing exposure to hazardous substances. But in cases involving individuals who are hypersensitive to such substances where it isn't economically feasible to eliminate those substances, genetic screening ought to be allowed, if not mandated.

Finally, it is argued, screening for genetic traits promotes the freedom of persons to make informed decisions concerning their own welfare. For an employee, a free choice about the work he or she performs requires information about job-related health risks--information that could be readily obtained through genetic tests.

Many critics of genetic screening maintain that the use of genetic tests to screen employees or job applicants is unjust. Justice, they argue, requires that people be treated equally unless there are relevant reasons for treating them differently. While a person's skills, knowledge, or experience may be relevant in deciding whether a person is currently capable of performing a job, a person's genetic traits are not. Also, they argue, it is unjust to treat people differently on the basis of fixed characteristics, such as race, sex, or genetic endowment, over which people have no control.

Moreover, predisposition to genetically-based disease is often associated with race or ethnic background. For example, the sickle cell trait is found in 1 out of 12 blacks, but only in 1 out of 1,000 whites. As a result, genetic screening would have a disproportionate impact on racial groups that have already been victims of past discrimination.

Those who oppose genetic screening also claim that the purported benefits of these tests„the reduction of occupational diseases„are exaggerated. First, the scientific validity and reliability of such tests have not been established, so the tests can yield inaccurate results. Second, the link between certain genetic traits, exposure to certain environments, and the likelihood of developing disease many years into the future is not well understood. Thus, even if a test is accurate in identifying the presence of a genetic trait, the unique characteristics of genetic diseases and other factors interfere with the ability to predict correctly that a particular individual will actually develop a disease because of that trait. As a result of this diagnostic uncertainty and the possibility of error, tests may fail to identify those individuals who are, in fact, at risk for occupational disease, and healthy workers may be denied jobs, or transferred or dismissed from jobs that would, in fact, cause them no harm.

The claim that genetic screening will benefit employees who, alerted to their condition, can then seek early treatment to prevent disease, is also overstated. The gap between science's ability to diagnose genetic disorders and the development of cures and treatment for those disorders continues to grow. The psychological burden of being informed that one will develop a debilitating, fatal disease, such as Huntington's Disease, for which there is no cure, could be devastating.

While the benefits of genetic testing are subject to dispute, the potential harms are not. Genetic testing stigmatizes healthy individuals as genetically "defective," making it difficult for them to find work.

Furthermore, if genetic screening is used to identify workers at risk for work-related diseases, what is to prevent their use to identify workers (and their families) who are at risk for diseases unrelated to the workplace? In a context of spiraling health care costs, proposals to mandate insurance coverage by employers, and a growing trend of companies adopting self-insurance plans whereby they assume the risks of employee health care expenses rather than relying on traditional insurance mechanisms, employers would have great incentive to screen workers likely to develop genetic diseases. And, given that the majority of Americans depend on employee-provided health insurance, excluding such workers from jobs would leave those employees most likely to need health care uninsured. Moreover, because genetic diseases are inherited, such exclusionary policies would affect a worker's descendants as well. One is faced with the specter of an ever expanding pool of genetically defective "unemployables," dependent on the government for income and lacking access to health care.

Others argue that employers have an obligation to provide a safe workplace, which should translate to removing the causes of occupational illness, rather than the victims. Instead of excluding workers who may be sensitive to hazardous substances at a worksite, employers have a duty to remove those substances.

Finally, genetic screening is often criticized as a violation of an individual's right to privacy. Information about one's genetic makeup is personal and private. No person has a right to intrude on this privacy without serious cause. Employers have no right to require that an individual submit to genetic testing when that person shows no signs of a disease that would interfere with his or her current ability to do a job.

Aa researchers unravel the genetic codes responsible for diseases, we are wise to attend to the ethical issues raised by their discoveries. In the case of genetic screening, such a task will require that we carefully weigh the potential harms and benefits of screening, the values we place on privacy and justice, and society's interest in maintaining a healthy and productive workforce.

Further reading:

Hurd, Sandra N., "Genetic Testing Your Genes and Your Job," Employee Responsibilities and Rights Journal, Vol. 3, No. 4 (1990), pp. 239-252.

Joyce, Christopher, "Your Genome in Their Hands," New Scientist, Vol. 127. No. 1729 (August 11, 1990), pp. 52-55.

Kolata, Gina, "Genetic Screening Raises Questions for Employers and Insurers," Science, Vol. 232 (April 1986), pp. 317-319.

Murray, Thomas, "Warning: Screening Workers for Genetic Risk," Hastings Center Report, Vol. 113, No. 1 (February 1983), pp. 5-8.

U.S. Congress, Office of Technology Assessment, Genetic Monitoring and Screening in the Workplace, OTA-BA-455, (Washington, D.C.: U.S. Government Printing Office, October 1990).

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