Genetic screening and the right not to know.

• Author: Weaver, Kirke D.

[W]hen it comes to being tested for a genetic predisposition to diseases

that have no real cures and whose date of onset cannot be predicted,

there are basically two types of people. There are "want-to-knowers" and

there are "avoiders."(1)

Nearly five years ago, my father was diagnosed with Alzheimer's disease. This terrible illness has proceeded to destroy my father, leaving only a hollow shell where a man once was. His case is possibly one of early onset Alzheimer's, a condition recently found to be genetically linked.(2) This discovery has left me facing a question that I am not sure I want to know The answer to--do I have that very same gene that my father has? Most likely, a test will be developed to determine the presence of the gene, and I will be faced with the decision of whether or not to be tested. If I decide not to be tested, what problems will I face? Could someone else force me to take that test? Could an employer or insurance company force me to know what I have no desire to know, and then deny me a job or coverage based on the information they uncover? Can they make me find out if I will die a horrible death like my father's? Do I have a right not to know? I am not alone in fearing that I have a gene that could change my life. Each one of us has between five and thirty misspellings or alterations in our DNA,(3) any one of which has the possibility to make an individual a target of genetic discrimination.

Personally, I have decided that I do not want to be screened for the Alzheimer's gene. I am an "avoider."(4) The potential discrimination that I Would face far outweighs any benefit this knowledge might give me. Furthermore, I am not sure that I would be able to deal with all of the psychological ramifications that accompany the screening process. If the test revealed that I did not have the gene, I would worry that my good fortune would not be shared with my brother, or other relatives that could potentially have the same gene. If the test revealed that I did have the gene, I believe that I would have a difficult time watching my father, knowing for "certain" that the same fate would befall me. I know that everyone does not live a long, healthy life. I know that I might die of Alzheimer's, but I also know that I could die much earlier, of some unexpected cause. Therefore, I am content at the current moment, to simply appreciate the life I have been given, and plan for the possibility of death; however, I do not want to become fixated on "knowing" my fate while that "fate" remains a mere possibility and is not a reality.

This article will examine the extent to which an employer or insurance company can force an individual to undergo genetic screening or monitoring.(5) First I will discuss the basic elements of genetic screening and monitoring. Second, I will focus on private industry, examining genetic screening and monitoring in the context of the Americans With Disabilities Act of 1990.(6) Third, I will examine the constitutional issues in the context of government employment and the possibility of government mandated genetic monitoring or screening.

The Basics of Genetic Screening and Monitoring

Genetic screening and monitoring are two separate techniques designed to accomplish different goals. Genetic monitoring involves periodically testing large groups of individuals in order to examine changes in their genetic makeup over time.(7) In the employment context, these tests are performed on workers to detect hazardous exposures to chemicals or other substances in the workplace. For example, diseases such as lung or testicular cancer have been linked to environmental causes.(8) Chemicals such as lead, asbestos, arsenic, and nickel have also been known to cause chromosome changes.(9) Employers justify these tests as workplace safety measures, and on the surface they appear effective by identifying potential hazardous work conditions. The tests could potentially help reduce the costs of workers' compensation claims or health insurance claims, and help maximize workplace safety and worker productivity.

The technique does have problems with narrowing the causes of the genetic changes because genetic monitoring detects not only genetic changes that are a result of workplace exposure, but also changes resulting from outside exposures such as smoking.(10) Furthermore, the genetic changes that are pinpointed do not necessarily lead to the future development of a disease.(11) However, the process of genetic monitoring can give employers valuable Insight into potential workplace hazards, even if the evidence is not necessarily conclusive.

Genetic screening, on the other hand, involves a one-time test to detect flaws in the underlying genetic makeup of an individual. These tests have two basic purposes in the employment context. First, employees or applicants could be screened for a genetic trait that makes them susceptible to a "pathological effect if exposed to specific agents."(12) Individuals with these traits are commonly referred to as "hypersusceptible." A second purpose of genetic screening is to detect more general genetic conditions that are not directly related to the workplace environment.(13)

Genetic screening to identify hypersusceptible employees is somewhat similar to genetic monitoring because both seek to improve the work environment for the employees. Monitoring attempts to isolate a workplace condition that alters the genetic makeup of employees, while screening for hypersusceptibilities seeks to locate pre-existing genetic defects that would react negatively to a workplace condition. For instance, an example of genetic screening would be a test to locate individuals affected by thalassemia, a deficiency that results in smaller red blood cells, which are possibly adversely affected by exposure to lead or benzene.(14) Even though the source of the problem is different for both monitoring and screening, the purpose behind the tests seems similar. Both seem to be directed towards improving the employee-workplace relationship; however, one real difference remains. While genetic monitoring looks to the workplace as the source of genetic defects, genetic screening focuses on the individual employees. Genetic screening involves excluding employees, whereas genetic monitoring focuses on improving the workplace environment. This problem might seem merely a matter of phrasing, but it has potentially important ramifications. Employees designated as hypersensitive more readily become targets of discrimination because they are singled out from other workers. With genetic monitoring, the workers are all treated similarly and the workplace is seen as the primary culprit.

General genetic screening for nonwork related defects is markedly different from either hypersusceptibility screening or genetic monitoring. With this kind of testing, the potential employees are being categorized and excluded because of general defects and conditions, unrelated to specific influences in the workplace environment. For instance, women with the BRCA1 gene have a 80-90% risk during their lives to develop breast cancer and have a significantly higher risk to develop ovarian cancer.(15) Other diseases such as Alzheimer's disease and colon cancer have also been found to have genetic links.(16) Employers could utilize genetic screening to determine if employees or potential employees were at risk for any of these potential genetically-caused illnesses. The employer's interests in this type of genetic screening would be to reduce the overall costs of the workforce by reducing insurance costs, minimizing worker absences, and maximizing productivity--concerns which can be critical to employers.(17)

Reasons for the use of genetic monitoring and screening

Employers and insurers have a number of powerful arguments supporting their use of genetic screening and monitoring. Most arguments apply to both monitoring and screening, but some have a greater persuasive power with regards to one technique or the other. However, with both technologies, the main arguments supporting their use focus on health and economics.

First, both genetic monitoring and screening can be used to reduce the risk of serious illness caused by workplace conditions.(18) With genetic monitoring, employers accomplish this goal by potentially eliminating any workplace condition found to be hazardous during the course of the testing.(19) With genetic screening, employers could prevent any hypersusceptible employees from workplace conditions that could cause them serious health problems.(20) These testing procedures could be used to eliminate or sharply reduce the influence of workplace hazards on the health of employees.

Second, genetic screening could improve the general health of the employees. By identifying genetic defects through genetic screening, employees could use the results to make better decisions regarding their future health. For instance, an employee can schedule regular mammograms if the screening reveals her to be susceptible to breast cancer.(21) If an employee is found to be especially susceptible to heart disease, modifying his or her diet and lifestyle could help prevent the occurrence of such an event. In these general, more "life-related" than specifically "work-related" ways, employers could use genetic screening to promote the overall health of their workers.(22) Not only would the screening improve the health of employees, but also the safety of the workplace could improve as well. Certain genetic conditions could pose serious risks to the safety of the individual worker and other co-workers. For instance, prohibiting individuals prone to heart attacks from becoming airline pilots would improve the safety of the industry.(23) Workers operating heavy machinery or other dangerous equipment could be screened for certain forms of Alzheimer's disease in order to prevent future accidents based on neurological deterioration...