Recent advances in genetic research have made it possible to identify the genetic basis for human diseases, opening the
door to individualized prevention strategies and early detection and treatment. These advances hold much promise for improving
health.
However, genetic information can also be used unfairly
to discriminate against or stigmatize individuals on the job. For example, people may be denied jobs or benefits because they
possess particular genetic traits--even if that trait has no bearing on their ability to do the job. In addition, since some
genetic traits are found more frequently in specific racial or ethnic groups, such discrimination could disproportionately
affect these groups.
This report demonstrates why American workers deserve federal
legislation to protect them from genetic discrimination in the workplace.
The Promise of Genetic Information
Unprecedented progress in identifying and understanding the 50,000 to 100,000 or so genes that make
up the human genome provides an opportunity for scientists to develop strategies to prevent or reduce the effects of genetic
disease.
Scientists have shown that straight-forward inherited errors in our genes are responsible for an
estimated 3,000 to 4,000 diseases, including Huntington's disease, cystic fibrosis, neuro-fibromatosis,
and Duchenne muscular dystrophy. More complex inheritance of multiple genetic errors also can increase
an individual's risk of developing common disorders such as cancer, heart disease, and diabetes.
Genetic technologies, such as simple DNA tests, increasingly
are becoming available to identify people who might have an increased likelihood of developing a disorder. The majority of
diseases Americans encounter, however, do not result solely from genetic predisposition but from the interaction of genes
with environmental factors, including occupation, diet, and lifestyle.
Consequently, genetic tests alone cannot predict with
certainty whether a person with a particular genetic error will in fact develop a disease.
With tools from the Human Genome Project, a new gene discovery is reported nearly every week. For example,
scientists recently reported the discovery of a genetic alteration that, in early studies, appears to double a person's risk
of colon cancer. The genetic alteration, which can be identified with a $200 blood test, is most prevalent among Jews of Eastern
European descent. Once identified, people who carry this mutation can use regular colon examinations to detect cancer growth
early when it is most easily treated.
Where effective means of early detection and treatment have been established, knowledge of genetic
alterations can help a person prevent or reduce the likelihood of illness, and in some instances actually reduce health care
costs. For example, genetic testing for hemochromatosis, glaucoma, and some cancers can alert the individual to begin preventive
measures before the disease causes harm.
Genetic Information and Discrimination
There are several ways to gather genetic information. It can be deduced from a family's medical history
or during a physical examination.
Routine laboratory tests that measure the body's output of specific substances might also suggest
the genetic make-up of the individual. But the most direct approach to obtaining genetic information is through analysis of
DNA, the material that makes up genes.
Such genetic tests identify specific DNA features in people who have already developed a disease,
in healthy people who may be at risk of developing a genetic disorder later in life, or in people who are at risk of having
a child with an inherited disorder.
Thus, genetic information includes information about
genes, gene products, and inherited characteristics that may derive from individuals or their family members.
While genetic technology increases the ability to detect
and prevent health disorders, it can also be misused to discriminate against or stigmatize individuals. A 1996 survey of individuals
at risk of developing a genetic condition and parents of children with specific genetic conditions identified more than 200
cases of genetic discrimination among the 917 people who responded. The cases involved discrimination by insurance companies,
employers, and other organizations that use genetic information.
Another recent survey of genetic counselors, primary care physicians, and patients, identified 550
people who had been denied employment or insurance based on their genetic predisposition to an illness.
In addition, because an individual's genetic information has implications for his or her family members
and future generations, misuse of genetic information could have intergenerational effects that are far broader than any individual
incident of misuse.
Many Americans are reluctant to take advantage of new breakthroughs
in genetic testing for fear that the results will not be used to improve their health but rather to deny them jobs or health
insurance.
A 1995 Harris poll of the general public found that over 85 percent of those surveyed indicated they
were very concerned or somewhat concerned that insurers or employers might have access to and use genetic information.
Sixty-three percent of the participants in a 1997 national telephone survey of more than 1000 people
reported that they would not take genetic tests for diseases if health insurers or employers could get access to the results.
Eighty-five percent felt that employers should be prohibited from obtaining information about an individual's genetic conditions,
risks, and predispositions.
Researchers conducting a multi-year Pennsylvania study
designed to understand how to keep women with breast cancer gene mutations healthy reported that nearly one-third of the high-risk
women invited to participate in the study refused because they feared discrimination or a loss of privacy.
Another study of 332 people who belonged to support groups for families with genetic disorders found
that fear of genetic discrimination resulted in 17 percent of the participants not revealing genetic information to employers.
In addition, people have hidden genetic information about
themselves due to fear of the effects of disclosure.
For example, an 18-year-old man, at risk for inheriting Huntington's disease
from one of his parents, who wished to enlist in the Marines to serve in the Persian Gulf War, believed that knowledge of
his risk status would disqualify him from service, even though it was unlikely that he would become symptomatic during his
tour of duty. He therefore answered "no" to questions regarding hereditary disorders on his application and did not include
Huntington's disease in his family medical history.
Another individual whose parent died of Huntington's
disease also chose to hide the truth from his employer. Fearing adverse consequences at work if this cause
of death was known, the individual arranged for the diagnosis of asphyxiation to be reported as the cause of death to avoid
mention of the disease in an obituary.
Fear of genetic discrimination and the consequences of
this fear have been reported in both the scientific literature and the popular press.
Genetic Information in the Workplace
Two types of genetic testing can occur in the workplace: genetic screening and genetic monitoring.
Genetic screening examines the genetic makeup of employees or job applicants for specific inherited
characteristics. It may be used to detect general heritable conditions that are not associated with workplace exposures in
employees or applicants.
For example, employers used genetic screening in the
early 1970s to identify African Americans who carried a gene mutation for sickle cell anemia. Those carrying the gene mutation
were denied jobs-even though many of them were healthy and would never develop the disease. In these cases, genetic screening
to identify the sickle cell trait often occurred without the consent of the individuals.
Genetic screening can also be used to detect the presence of genetically determined traits that render
an employee susceptible, or "hypersusceptible," to a certain disease if exposed to specific environmental factors or substances
that may be present in the workplace.
In theory, genetic screening for occupationally relevant traits has the potential to be used to assign
employees who are genetically susceptible to certain occupational diseases away from harmful exposure.
However, no consensus currently exists regarding the validity of the scientific evidence or the usefulness
of the genetic tests reported to predict an individual's susceptibility to exposure.
Genetic monitoring, a second type of testing, ascertains whether an individual's genetic material has
changed over time due to workplace exposure to hazardous substances. Evidence of genetic changes in a population of workers
could be used to target work areas for increased safety and health precautions and to indicate a need to lower exposure levels
for a group exposed to a previously unknown hazard. The ultimate goal of genetic monitoring is to prevent or reduce the risk
of disease caused by genetic damage.
Although genetic changes such as chromosomal damage have been associated with exposure to radiation
and some chemical mutagens or carcinogens, little is known about which changes are predictive of subsequent disease risk.
Much more research is required to establish the relationship, if any, between those changes and subsequent disease risk for
affected populations and individuals. For this reason, use of genetic monitoring results to make employment decisions is rarely
justifiable.
In addition, some employers may seek to use genetic tests to discriminate against workers-even those
who have not yet or who may never show signs of disease-because the employers fear the cost consequences.
Based on genetic information, employers may try to avoid hiring workers who they believe are likely
to take sick leave, resign, or retire early for health reasons (creating extra costs in recruiting and training new staff),
file for workers' compensation, or use health care benefits excessively.
A 1989 survey of large businesses, private utilities, and
labor unions found that 5 percent of the 330 organizations responding conducted genetic screening or monitoring of its workers.
Another 1989 survey of 400 firms, conducted by Northwestern National Life Insurance, found that 15
percent of the companies planned, by the year 2000, to check the genetic status of prospective employees and their dependents
before making employment offers.
Thus, there is evidence that genetic information continues to be used to discriminate against qualified
workers. The economic incentive to discriminate based on genetic information is likely to increase as genetic research advances
and the costs of genetic testing decrease.
Real People-Real Discrimination
Genetic predisposition or conditions can lead to workplace discrimination, even in cases where workers
are healthy and unlikely to develop disease or where the genetic condition has no effect on the ability to perform work. As
a result, real people are denied employment opportunities.
One individual was screened and learned he was a carrier of a single mutation for Gaucher's disease.
His carrier status indicates that he might pass this mutation to his children, but not that he would develop Gaucher's disease
himself. He revealed this information when applying for a job and was denied the job because of his genetic mutation, even
though it had no bearing on his present or future ability to perform a job.
A 53-year-old man at a job interview with an insurance company revealed that he had hemochromatosis
but was asymptomatic. During the second interview, he was told that the company was interested in hiring him but would not
be able to offer him health insurance because of his genetic condition. He agreed to this arrangement. During his third interview,
the company representative told him that they would like to hire him, but were unable to do so because of his genetic condition.
An employee's parent developed Huntington's disease-indicating that the
employee had a 50 percent chance of inheriting the mutated gene that would cause her to develop the disease.
She decided to be tested. A genetic counselor advised her to secure life
and health insurance before testing, because a positive test result would not only mean that she would get the disease but
would probably prevent her from obtaining insurance as well.
A co-worker who overheard her making arrange-ments to be tested reported the employee's conversations to their boss. Initially,
the boss seemed empathetic and offered to help. When the employee eventually shared the news that her test results indicated
that she did carry the mutated gene, she was fired from her job.
In the 8-month period prior to her termination, she had received three
promotions and outstanding performance reviews. Frightened by their sister's experience, none of her siblings are willing
to undergo genetic testing for fear of losing health insurance or jobs. Consequently, they must live with the uncertainty
of not knowing whether they have inherited the genetic trait that leads to Huntington's disease.
Efforts to Restrict Use of Genetic Information in the Workplace
There is no scientific evidence to substantiate a relationship between unexpressed genetic factors and an individual's
ability to perform his or her job. Thus, most expert groups recommend prohibiting or severely restricting the use of genetic
testing and access to genetic information in the workplace.
The American Medical Association's (AMA) Council on Ethical and Judicial
Affairs concludes that it is inappropriate to exclude workers with genetic risks for disease from the workplace because of
that risk. In the future, however, the AMA Council acknowledges there may be an appropriate but limited role for genetic testing
in certain situations to protect workers who have a genetic susceptibility to occupational illness when health risks can be
accurately predicted by the test.
The National Action Plan on Breast Cancer (NAPBC) and the National Institutes
of Health-Department of Energy Working Group on Ethical, Legal and Social Implications of Human Genome Research also has drafted
recommendations for state and federal policy makers to protect against genetic discrimination in the workplace.
