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Mapping Public Policy for Genetic Technologies

Chapter 8. Employment

Information Contained in this Chapter
Genetic Information and the Workplace -- Balancing Needs of Employers to Optimize Productivity and Health vs. the Rights of Employees to Privacy
Background
	Genetic Monitoring
	Genetic Screening
Federal and State Laws
	Federal Law -- Current Status of Employer's Use of Genetic Information
	Other Federal Laws
	State Laws

Genetic Information and the Workplace—Balancing Needs of Employers to Optimize Productivity and Health vs. the Rights of Employees to Privacy

Proponents of strict privacy laws that favor the employee recognize that genetic discrimination is not yet common because the high cost of testing and the low incidence of the conditions for which testing is available do not make genetic testing cost effective. However, they believe the rapid developments in this field and the documented misuse of genetic information—such as the firing of a social worker with an exemplary work record because a genetic test indicated she was at risk for Huntington’s disease—are reasons to develop legislation that would prevent the abuse of genetic tests in the workplace.

Opponents of restrictive privacy laws advocate the use of genetic testing as a means of enhancing employee health and work force productivity. Major corporations contend that genetic monitoring is an important tool to be used in developing strong standards for employee health. Radiation, certain chemicals or other factors may create known risks of genetic damage in the work place. Without monitoring, employees can suffer irreversible damage before overt symptoms appear. To reduce such risks, a few employers—such as certain chemical companies whose workers are exposed to vinyl chloride—conduct periodic genetic tests of workers who are exposed to hazards In cancer, for example, a cell must suffer several distinct kinds of damage before it becomes malignant. Ideally, then, periodic testing can detect early damage and the employer can transfer the employee before the disease can become endemic.

State legislators face the challenging task of sorting through these highly complex and technical issues to develop public policy that will allow society to benefit from the scientific breakthroughs in genetic technology, while balancing the needs of employers to enhance employee health and work force productivity and protecting the employee from discrimination based on genetic testing.

In such cases a few employers conduct periodic genetic tests of exposed employees to detect genetic damage before serious harm is done and transfer the employees to positions in which they will not be exposed. For example, some chemical companies test workers who are exposed to vinyl chloride and transfer those who have chromosome breaks to other locations.

Genetic screening programs are designed to exclude workers who are likely to become ill. Preventing absenteeism and employee turnover are two considerations, but the driving force is likely to be an effort to reduce the employer’s medical costs. Many genetic conditions are extremely serious and require extensive medical care. The cost of care for someone who has an advanced case of Huntington’s disease often exceeds $100,000 per year. Most employers pay for a substantial portion of their employees’ medical care. This creates financial incentives for employers to avoid hiring individuals who are at risk for future disease. These incentives vary with the size of the employer, the nature of the health benefits provided and whether the employer purchases commercial insurance (e.g., self-insurance).

• How many employers conduct genetic tests?

In 1997 the American Management Association found that slightly more than 5 percent of its members were conducting genetic tests. Methodological limitations make it difficult to conclude that genetic testing has increased. It is quite possible that the number of employers conducting genetic tests will continue to increase. Our knowledge of human genetics is increasing at a dramatic rate. The number of identifiable genes that are known to create medical risks is greater every year. The cost of medical care continues to escalate (although at a slightly lower rate than in the recent past). Thus, the financial incentives for employers to conduct genetic tests are likely to increase for the foreseeable future. Furthermore, fast, cheap multi-plex testing for hundreds or thousands of genetic markers at once will make genetic testing of low-risk populations economically feasible.

It is not necessary, however, to conduct medical tests to obtain genetic information about employees and applicants. Employers also can obtain it by (gaining) access to employees’ medical records, which may contain information about genetic testing done for diagnostic or family planning purposes, or simply by learning about the individual’s family history.

• What do employers do with genetic information?

In a screening program, where the health risk is not created by occupational exposure and the objective is to reduce medical costs, the response to learning that someone carries a mutation for a potentially harmful gene is to exclude them from the work (See the article "Individual, Family and Societal Dimension of Genetic Discrimination: A Case Study Analysis" by Geller et al. in Science and Engineering Ethics 2, issue 1, 1996).

Federal and State Laws

The legal status of asymptomatic individuals who are genetically predisposed to future disease is less clear. Because they have no current impairments, such people do meet the principal test for ADA coverage. An argument can be made that they are covered because the employer regards them as having a disability. The Equal Employment Opportunity Commission (EEOC) has taken this view, but this interpretation has not yet been reviewed by the courts. Moreover, this interpretation does not apply to asymptomatic carriers of recessive and x-linked disorders.

Even if the EEOC’s interpretation prevails, however, protection may be more theoretical than real for job applicants. This is because the ADA does not prevent employers from obtaining genetic information about applicants. Once an employer has made a "conditional job offer" to an applicant, it is free to collect unlimited medical information (to the extent permitted by state law) about him or her, including information that it cannot legally use. Thus, an employer that has made a conditional job offer can require applicants to take a genetic test, and can require individuals to sign a release authorizing the disclosure of all medical information in their medical records or family history, including genetic information.

Title VII of the Civil Rights Act of 1964. Title VII should prohibit genetic discrimination in the few cases where it would have a disparate effect in regard to race, gender, religion or national origin.

Health Insurance Portability and Accountability Act of 1996. The Health Insurance Portability and Accountability Act (HIPPA) of 1996 already provides some federal protection against genetic discrimination when an employer provides medical insurance. It does so by putting limitations on what can be considered a preexisting condition. The statutory definition of preexisting condition is any physical or mental condition for which medical advice, diagnosis, care or treatment was recommended or received within the six-month period ending on the enrollment date (§9801(a) (1)). Furthermore, genetic information cannot be treated as a preexisting condition unless there has been a diagnosis of the condition to which the genetic information relates (§9801 (b) (1) (A) and (B)).

Many states are in the process of trying to pass legislation relating to genetic discrimination. (see table 8-1). For example, from 1995 to 1996, California, Connecticut, Hawaii, Kansas, Michigan, Nebraska, Oklahoma and Pennsylvania all attempted to pass some form of genetic discrimination legislation. Five of these proposed bills would have fallen prey to the same difficulty as the ADA. They would have prohibited discrimination rather than the gathering of the information.

Because of the uncertainties of federal law, many states have considered legislation to prevent employment discrimination based on genetics. Thirteen states have enacted legislation.

Drafting legislation in this area is difficult because of the highly technical nature of the subject and the lack of uniformity in terms and definitions. Most laws vary widely in their language.

The earliest laws prevent discrimination on the basis of specific genetic conditions, such as sickle cell trait. These laws do not cover discrimination based on other genetic markers or traits. Later statutes broadened coverage to cover "genetic testing." As discussed earlier, testing is one way to obtain genetic information, but other sources are now available and may increase in the future.

A few state statutes outlaw discrimination based on all genetic conditions, no matter how the information is obtained. None of the existing state laws prevent employers from collecting non job-related genetic information about applicants. States that have enacted legislation in this area are listed in the box below.

To Table 8-1. State Genetic Employment Legislation Introduced in 1997

To Next Section: Chapter 9. Privacy
To Previous Section: Chapter 7. Insurance
To Title Page and Table of Contents
To Genetics home page.

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