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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 straightforward inherited errors in our
genes are responsible for an estimated 3,000 to 4,000 diseases, including Huntington's disease,
cystic fibrosis, neurofibromatosis, 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 arrangements 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.
Generally, the recommendations limit the collection, disclosure, and
use of genetic information and support strong enforcement of these limitations through governmental agencies or private right
of action. Exceptions are made for possible situations in the future that may arise if testing is shown to be scientifically
valid to predict occupational risk and situations where an individual is unable to meet the performance requirements of a
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Existing Protections are Limited
There are no federal laws that directly and comprehensively protect against
abuses in the gathering or use of genetic information in the workplace.
A few protections exist incidentally under federal laws enacted to address other
types of workplace discrimination. The incidental federal protections against workplace discrimination based on genetic information
that do exist are narrow in scope and, in large measure, not well established. They are not sufficient to provide Americans
with adequate protection against genetic discrimin-ation in the workplace.
States continue to enact legislation in response to growing concern over the specter
of genetic discrimination in the workplace. Existing state laws, however, differ in coverage, protections afforded, and enforcement
schemes.
Federal leadership is necessary to ensure that all workers are protected against
discrimination based on genetic information.
Federal Laws
The only federal law that directly addresses the issue of genetic discrimination
is the 1996 Health Insurance Portability and Accountability Act (HIPAA). HIPAA prohibits group health plans from using any
health status-related factor, including genetic information, as a basis for denying or limiting eligibility for coverage or
for charging an individual more for coverage. In addition, the Administration has worked closely with Congress on legislation
that would prevent an insurance company or HMO from disclosing genetic information or charging an entire plan or group more
for health insurance on the basis of genetic information. These efforts, however, do not address the larger problems of the
gathering or use of genetic information in the workplace outside of the health insurance context.
The most likely current source of protection against genetic discrimination in the
workplace is provided by laws prohibiting discrimination based on disability. Title I of the Americans with Disabilities Act
(ADA), enforced by the Equal Employment Opportunity Commission (EEOC), and similar disability-based anti-discrimination laws,
such as the Rehabilitation Act of 1973, do not explicitly address genetic information, but they provide some protections against
disability-related genetic discrimination in the workplace. Under the ADA, individuals with symptomatic genetic disabilities
have the same protections against discrimination as individuals with other disabilities. However, as we make new advances
in genetics, this protection will not be sufficient. More and more people will be vulnerable to genetic discrimination based
on unexpressed genetic conditions that do not fall within the clear disability-based discrimination prohibitions of the ADA.
Protection against discrimination based on genetic information for those who do not
currently have a symptomatic genetic disability is not well established. Individuals who do not currently have a symptomatic
genetic disorder and, therefore, may not be protected against discrimination as a currently disabled person include unaffected
carriers of a disease who may never get the disease themselves, individuals with late-onset genetic disorders who may be identified
through genetic testing as being at high risk of developing the disease, and others who are identified through family history
as being at high risk of developing the disease.
The EEOC has tried to provide ADA protection to individuals who do not have symptomatic
genetic disabilities but who may be subject to discrimination based on genetic information. In 1995 the EEOC issued enforcement
guidance advising that an employer who takes adverse action against an individual on the basis of genetic information relating
to illness, disease, or other disorders regards that individual as having a disability within the meaning of the ADA. The
ADA prohibits discrimination against a person who is regarded as having a disability. The guidance, however, is limited in
scope and legal effect. It is policy guidance that does not have the same legally binding effect on a court as a statute or
regulation and has not been tested in court. Moreover, many cases based on the argument that an employer has discriminated
against workers by regarding them as disabled have not been well-received by the courts.
In addition, the ADA does not protect workers from requirements or requests to provide
genetic information to their employers. Under the ADA, an employer generally may not make medical inquiries about a job applicant
prior to extending a conditional offer of employment. However, once a conditional offer of employment has been extended, but
before the individual begins work, the employer may obtain extensive medical information about the applicant, including genetic
information. During this period an employer could, for example, obtain and store genetic samples of job applicants, require
genetic screening as a condition of employment, or purchase genetic information about applicants from a genetic information
data bank. In addition, once the applicant is hired the employer may request medical information that is job related and consistent
with business necessity.
It is difficult to ensure that medical information is not used to discriminate. Detecting
discrimination based on genetic information, which indicates a risk rather than a manifestation of disease, is particularly
difficult. As a result, genetic information could be used to deny workers employment or opportunities regardless of their
ability to do the job. This concern is especially significant because of the rapid advances in genetic research. For instance,
genetic information obtained today may, in the future, be found to indicate a risk factor that could be the basis for discrimination.
Moreover, this information also could be used to predict the health risks of an individual's family members--creating the
potential that genetic information could be used to discriminate against future generations of workers.
Another federal law that may incidentally provide protection against some forms of
genetic discrimination is Title VII of the Civil Rights Act of 1964. An argument could be made that genetic discrimination
based on racially or ethnically linked genetic disorders constitutes unlawful race or ethnicity discrimination. Protection
under Title VII, however, is only available where an employer engages in discrimination against a particular racial or ethnic
group based on a genetic trait that is substantially related to a race or ethnic group. Since a strong nexus between race
or national origin has been established for only a few diseases, Title VII will not be an effective tool for combating most
forms of genetic discrimination. Thus, it is clear that current anti-discrimination laws would not adequately address the
issue of genetic-based discrimination in employment.
State Laws
A number of states have addressed the issue of genetic discrimination in employment
through state legislation. As of October 1997, 14 states had enacted laws to provide protections against various forms of
genetic discrimination in the workplace. There are wide variations among these state laws.
Some of the first state laws enacted to address this issue prohibited discrimination
against individuals with specific genetic traits or disorders, such as the sickle-cell trait (Florida and Louisiana)
or the hemoglobin trait (North Carolina).
Later laws cover broader categories of genetic traits and disorders. For example,
a 1981 New Jersey statute (later broadened) prohibits discrimination in employment based on an "atypical hereditary
cellular or blood trait," and a New York law prohibits employers from denying equal employment opportunities based
on "unique genetic disorders."
Other state laws regulate both the use of genetic testing in employment decisions
and the disclosure of genetic test results. These state laws generally prohibit employers from requiring workers and applicants
to undergo genetic testing as a condition of employment.
For example, Oregon state law prohibits employers from using genetic information
to distinguish between or discriminate against applicants and employees and prohibits employers from subjecting applicants
and employees to genetic testing.
A recently enacted Texas law prohibits employers, labor organizations, licensing
agencies, and employment agencies from discriminating against any individual on the basis of the results of a genetic test
or because of the individual's refusal to submit to genetic testing.
Some states permit genetic testing when it is requested by the worker or applicant
for the purpose of investigating a worker's compensation claim or determining the workers' susceptibility to potentially toxic
chemicals in the workplace.
These statutes often require the worker to provide informed written consent for such
testing and contain specific restrictions governing disclosure and prevent the employer from taking adverse action against
the employee.
Given the substantial gaps in state and federal protections against employment discrimination
based on genetic information, comprehensive federal legislation is needed to ensure that advances in genetic technology and
research are used to address the health needs of the nation-and not to deny individuals employment opportunities and benefits.
Federal legislation would establish minimum protections that could be supplemented by state laws.
The need for federal protection has been recognized by Congress with the introduction
of numerous bills with bipartisan support. Three stand-alone bills have been introduced that amend existing civil rights or
labor laws to protect workers against employment discrimination based on genetic information (S. 1045, Sen. Daschle; H.R.
2275, Rep. Lowey; H.R. 2215, Rep. Kennedy). Two additional bills have been introduced that include worker protections
against discrimination based on genetic information, as part of broader proposals addressing the use of genetic information
(S. 422, Sen. Domenici; H.R. 2198, Rep. Stearns).
Guiding Principles for Federal Action
Federal legislation is needed to ensure that knowledge gained from genetic research
is fully utilized to improve the health of Americans and not to discriminate against workers. This legislation should provide
a floor or minimum level of protection and allow existing state laws to provide greater protection.
Workers should not be forced to avoid tests that can help prevent disease because
of fear of discrimination. At the same time, we must preserve the ability of scientists to continue the research, including
studies of occupational health and safety, that is so vital to expanding our knowledge of genetics and health.
The Administration proposes that Congress pass a law to ensure that discoveries made
possible by the Human Genome Project are used to improve health and not to discriminate against workers or their families.
Legislation generally should include the following basic protections against misuse of genetic information in the workplace.
Employers should not require or request that employees or potential employees take
a genetic test or provide genetic information as a condition of employment or benefits. Employers should not use genetic information
to discriminate against, limit, segregate, or classify employees in a way that would deprive them of employment opportunities.
Employers should not obtain or disclose genetic information about employees or potential
employees under most circumstances.
Genetic testing and the use of genetic information by employers should be permitted
in the following situations to ensure workplace safety and health and to preserve research opportunities. However, in all
cases where genetic information about employees is obtained, the information should be maintained in medical files that are
kept separate from personnel files, treated as confidential medical records, and protected by applicable state and federal
laws.
An employer should be permitted to monitor employees for the effects of a particular
substance found in the workplace to which continued exposure could cause genetic damage under certain circumstances. Informed
consent and assurance of confidentiality should be required. In addition, employers may only use the results to identify and
control adverse conditions in the workplace and to take action necessary to prevent significant risk of substantial harm to
the employee or others.
The statutory authority of a federal agency or contractor to promulgate regulations,
enforce workplace safety and health laws, or conduct occupational or other health research should not be limited.
An employer should be able to disclose genetic information for research and other
purposes with the written, informed consent of the individual.
These recommendations should apply to public and private-sector employers, unions,
and labor-management groups that conduct joint apprenticeship and other training programs. Employment agencies and licensing
agencies that issue licenses, certificates, and other credentials required to engage in various professions and occupations
also should be covered.
Individuals who believe they have been subjected to workplace discrimination
based on genetic information should be able to file a charge with the Equal Employment Opportunity Commission,
Department of Labor, or other appropriate federal agency for investigation and resolution.
The designated agency should be authorized to bring lawsuits in the federal
courts to resolve those issues that would not settle amicably. The courts should have the authority to halt the violations
and order relief, such as hiring, promotion, back pay, and compensatory and punitive damages, to the individual. Alternatively,
an individual should be able to elect to bring a private lawsuit in federal or state court to obtain the same type
of relief plus reasonable costs and attorney's fees.
In order to enforce these protections, the designated enforcement agency must be
given sufficient additional resources to investigate and prosecute allegations of discrimination.
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OTHER RESOURCES
RECOMMENDATIONS ON GENETIC INFORMATION AND THE WORKPLACE : Ethical, Legal and Social Implications of Human Genome Research
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SHRM: Strategy Suggestions: Genetic Information in the Workplace
Society for Human Resource Management (SHRM): Guidelines for Genetic Information in the Workplace
Issues Brief: : Genetic Information In The Workplace
Prepared by the Society for Human Resource Management Workplace Trends & Forecasting
Program
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