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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