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Genetic Testing Should You Be Afraid It's No Joke

July 1, 1997
Related Topics: Medical Benefits Law, Discrimination and EEOC Compliance, Policies and Procedures, Featured Article, Benefits
When Kathy Hudson peers into a test tube filled with human DNA, she sees more than the genetic soup that might someday unlock the mysteries of life and disease. The assistant policy director at the National Genome Research Institute in Bethesda, Maryland-which oversees a 15-year endeavor to catalog and understand the 80,000 to 100,000 genes contained in the human body-can't help but observe a mind-boggling array of moral, ethical, legal and social issues floating just beneath the laboratory fluids.

"Developing tests, therapies, treatments and cures for genetically induced diseases is a complex task. But it's almost overwhelming to consider how all the information should be used," she states matter-of-factly. "You can't mention genetic research and testing without examining an array of issues, including public health, privacy, employment, discrimination and medical insurance. Genetic research touches almost every aspect of our lives."

As the Human Genome Project unfolds, Hudson's words are taking on a more onerous tone. Since 1990, the institute's team of scientists-working under the direction of the National Institutes of Health-have cloned more than 70 genes. That has made it possible to identify individuals who are at increased risk to contract various conditions, including Alzheimer's disease, heart disease, cystic fibrosis, Huntington's disease and breast cancer.

The upshot? Once the nature of a gene is thoroughly understood, it's possible for individuals to make changes in lifestyle and undergo specialized treatments and emerging gene therapies. Scientists, ethicists and medical experts agree this opportunity for early intervention is a positive step forward. At present, it's estimated that 390,000 workers contract a disabling occupational disease each year, and 100,000 of these workers die. (An occupational disease is one that arises out of and in the course of employment and for which a person is entitled to benefits under workers' compensation or a similar law.) When the Bureau of Labor Statistics examined occupational illnesses in the early 1980s, it found that employers in the private sector experience 850,000 lost workdays a year. Screening and testing for genetic abnormalities could prevent many illnesses and deaths. At least, that's how the thinking goes.

It's an appealing strategy, but one with a front door leading directly into a house of mirrors. There are no easy answers to questions such as: Who decides whether it's appropriate for an individual to work in a high-risk job? Does an employer have the right to know that an individual has a predisposition to a disease-particularly if the workplace could contribute to the onset of the condition? What if an individual's condition leads to exorbitant medical insurance costs for an employer?

"One of the sobering realities of modern science is that technological advance seems to exceed society's coping skills."

These scenarios and more constitute the dark underside to genetic testing. The ability to abuse and misuse such information is a growing problem. "There's serious concern that genetic information will be misused outside the medical arena. And one of the biggest areas of concern is that it'll be misused in the context of the workplace," says Karen Rothenberg, director of the Law and Healthcare Program at the Baltimore, Maryland-based University of Maryland School of Law and a leading expert on the subject. Adds Alan Westin, professor of public law and government at New York City-based Columbia University and publisher of the newsletter Privacy and American Business, "Whenever you develop a medical test that can be used to make decisions about employment or insurance, you have the makings of a major privacy issue."

But genetic testing is far more than that. It also leads down the prickly path of discrimination and strikes at the heart of employee benefits, including medical coverage. Not surprisingly, the controversy is beginning to spill over into boardrooms and lunchrooms of companies large and small. Although only an estimated 5 percent of U.S. companies conduct any type of genetic testing currently-mostly chemical, petroleum and electronics companies-plenty of people are worried. A 1995 Harris Poll commissioned by Westin's Center for Legal and Social Research at Columbia University found that 86 percent of 1,000 respondents were "very concerned" or "somewhat concerned" that insurers or employers might use genetic test results as a basis for decision making. Another study conducted at Washington, D.C.-based Georgetown University found that among those with a family history of genetic disorders, 13 percent of 332 individuals believed they were denied employment or let go from a job because of genetic information.

Amid the growing controversy, one thing is certain: Genetic information will become more common-and more controversial-in the coming years. "The privacy of health information is much easier to agree on than the privacy of genetic information, which doesn't necessarily belong to any one individual," says Hudson. "Genetic information belongs to families, races and communities. And it can easily be used to discriminate against people rather than help them." HR, therefore, is at the center of the storm. By understanding the issues, human resources managers can help develop a corporate policy that will balance the assets and liabilities of genetic testing.

Messing with Mother Nature?
One of the sobering realities of modern science is that technological advance seems to exceed society's coping skills. And nowhere is this conflict more apparent than in the field of genetics. For centuries, humans have attempted to alter the course of their genetic destiny-in some cases with disastrous results. The most frightening example of such thinking was apparent in the Nazi atrocities of the 1930s and 1940s-a period in which millions of Jews, Gypsies and handicapped individuals systematically were murdered.

But this concept of eugenics, a Greek term that means "good birth," hardly is limited to the Nazi empire. Other societies, including the United States, have at one time or another dabbled in selective breeding. After British scientist Francis Galton proposed that society could be improved through better breeding, the U.S. government began authorizing programs that allowed the sterilization of those with "deleterious genes." By 1929, more than 20 states had passed laws allowing for the sterilization of those in prisons or mental hospitals.

Even today, concerns remain. Some observers worry that future genetic testing could encourage the elimination of all "imperfect" fetuses and raise profound questions about what's abnormal.

Not only could such thinking lead to an increase in unnecessary abortions, critics assert, it might encourage people to selectively breed specific qualities and traits. The medical and legal establishments desperately are trying to steer clear of the discipline's bad reputation.

Genetic testing-a risky business for HR.
Mention the words "genetic testing" to HR professionals, and you're likely to garner a reaction somewhere between curiosity and utter disbelief. (Genetic testing includes diagnostic and carrier testing, and prenatal diagnosis.) But reactions are likely to change as the topic continues to grab headlines. Presently, little outright opposition to genetic testing exists. "Most people realize that if they have the opportunity to know about a genetic tendency and reduce the odds of ever getting a disease, they'll choose to receive a test," says Rebecca Locketz, legal director for the American Civil Liberties Union Workplace Rights Project in Princeton, New Jersey. "The problem centers around the privacy of such data. Who has access to the information and what can they do with it?"

Some experts, like Rothenberg, openly worry that if employers have access to this information, many individuals will either refuse to take genetic tests or pay out of their pockets to ensure the data doesn't fall into the hands of an employer or an insurance company. "If people are afraid to submit to tests because of the possible repercussions, then it defeats the purpose of such a program," she says. "They aren't able to take a course of action that could save their lives or improve the quality of their lives." An internal study conducted by medical and pharmaceutical giant SmithKline Beecham Clinical Laboratories in New Brighton, Minnesota, confirmed that the issue is a concern to its employees. Those who refuse to take genetic tests could find themselves passed over for promotions and rejected for group insurance.

So far, only a few companies have put genetic testing under the ethical and legal microscope. One of them is Baxter International Inc., a Deerfield, Illinois-based medical-supply company with $5.4 billion in sales and 37,000 employees worldwide. It approaches the issue with serious concerns. Steve Kahn, a labor attorney by profession and vice president of corporate affairs by title, isn't timid about asserting his distaste for using genetic information in the workplace. "Sophisticated employers don't want anything to do with genetic testing," he states flatly. "Even if they have access to data that's predictive of a disease, they wouldn't want to use it. In too many cases, it could create the appearance that they're discriminating against employees."

Kahn insists that using genetic tests as the basis for employment decisions ranks somewhere between risky and illegal. It also can become a public relations nightmare-something that a few employers already have discovered. At Lawrence Berkeley Laboratory in Berkeley, California, management tested African-American workers for sickle-cell anemia and the genetic trait for the disease for more than a decade-without workers' consent. (About one in six African-Americans carry the sickle-cell gene, while only one in 1,000 whites have it.) The organization also tested employees for syphilis and pregnancy without permission during the 1970s and '80s.

All along, workers thought they were giving urine and blood samples for cholesterol screening. An African- American employee discovered the transgression only after reviewing her personnel file as part of a workers' compensation case. That brought San Francisco attorney Vicki Laden into the fray. She promptly filed a class-action lawsuit (not all were African-Americans) alleging violations of privacy, equal protection and the Americans With Disabilities Act (ADA). Laden steadfastly insists that a "pattern of promotions being denied along the lines of race and national origin" existed for those carrying the sickle-cell gene mutation. Although a trial court dismissed the case, the class-action suit is now under appeal.

Beware of discrimination and privacy issues.
What's particularly insidious about discrimination, of course, is that it's so difficult to prove. The ADA and various other laws provide some protection for workers, but discrimination remains a broadly defined territory. If a company tests for sickle-cell anemia, for example, race is factored into the equation before the first drop of blood is placed in a test tube.

But discrimination is just one piece of the puzzle. Today, the threat to supposedly private medical data is everywhere. Electronic databases leak information-particularly as records are shuffled back and forth between various computer systems. Despite federal laws that require a company to maintain personnel records separate from medical records, information occasionally manages to ooze out. Keeping genetic information private poses even greater concerns.

Says Locketz: "An employer could find out about a genetic condition without ever gaining access to an employee's records. The simple act of paying an insurance bill could tip off an employer." Likewise, an employee who discusses with a co-worker the fact that a parent is afflicted with Alzheimer's disease or Huntington's disease, both conditions that can cause memory impairment, could lose his or her job if the information winds up in the wrong hands.

An absurd notion? Hardly. Last year, a Milwaukee saleswoman, Christina DeMark, made headlines after saying she'd been fired a month after telling her employer she had a gene for Huntington's disease, which had killed her mother. Although DeMark showed no symptoms of the condition, her employer badgered her to quit, she says. And when she refused, the company eventually let her go. Through it all, the employer insists it let go of the woman for reasons other than her genetic condition.

Question the reliability factor.
The idea of using genetic information outside the medical arena has many observers deeply concerned. Rothenberg believes that the three main threats-discrimination, loss of insurance benefits and the invasion of privacy-are inexorably intertwined. And, for those who want to take action, turning to the legal system often means "disclosing the very information you intended to keep private," she says.

Her worries aren't unfounded. In the 1970s, the U.S. Air Force Academy refused to accept applicants carrying the gene for sickle-cell anemia, and several major commercial airlines kept employees with the gene on the ground in jobs that paid less. That's because a lack of oxygen could induce the onset of the actual disease-although those carrying the gene routinely fly commercial airlines without incident. Likewise, insurance companies charged these workers higher premiums. So it's not surprising that the insurance industry admits that serious problems could exist in the future. According to a 1996 report published by the Kansas City, Missouri-based National Association of Insurance Commissioners, a genetic test indicating potential for disease "could threaten the individual's ability to obtain… coverage."

"Scientists aren't the only ones scrutinizing genetic testing. Lawyers, politicians, and the public are paying close attention."

What's even more disturbing is that genetic testing, for all the pomp and circumstance, still lies somewhere between witchcraft and science. For one thing, genetic tests aren't altogether reliable. For example, in 1996 doctors at Baltimore, Maryland-based Johns Hopkins Medical Institution found that 56 of 177 patients undergoing genetic testing for colon cancer would've received false negative test results without additional laboratory tests.

Even if the accuracy of results could be guaranteed, the tests wouldn't necessarily provide conclusive information. A person with a predisposition to breast or colon cancer might experience the onset of disease at age 25 or 85. Then again, he or she might go through life without ever displaying a single symptom. "Everyone has some predisposition to a genetic disease," notes Hudson. "Whether or not a person gets the disease depends on an array of complex issues, including environmental factors."

The latter is a key point. Although many experts would prefer to see employers eschew genetic testing altogether, they recognize that some testing might prove beneficial and fall under the category of business necessity. "If you have a gene that makes you susceptible to seizures and you're applying for work in a china shop, your employer has a legitimate reason to know. One seizure in the middle of the floor could destroy the entire business," explains the American Civil Liberties Union's (ACLU) Locketz.

Unfortunately, most scenarios aren't so clear-cut. What about an employee who's offered a promotion and must transfer to a different facility where environmental factors could exacerbate a genetic condition? Although some genetic tests would undoubtedly prove beneficial for both employer and employee, workers in high-risk fields often lack the education or skills to make career changes. In such instances, critics argue, genetic screening can shift the blame from employers that create hazardous work environments to workers who have "inferior" genes.

Battle lines are being drawn.
Genetic testing is beginning to leave its mark on HR professionals and others charged with developing policies. As cases wend their way through the courts and the $3 billion Human Genome Project marches toward completion in 2005, many observers are beginning to realize how profound an influence genetic testing could have on the workplace of the future. Once scientists map the entire genetic structure of the human body, the genie clearly will be out of the bottle.

Indeed, scientists aren't the only ones scrutinizing genetic testing. Lawyers, politicians and the public are paying close attention-and are drawing battle lines. In 1995, the Equal Employment Opportunity Commission expanded the ADA to protect individuals subjected to discrimination on the "basis of genetic information related to illness, disease or other disorders." Although widely praised, the directive does nothing to protect an individual's privacy. Pre-employment medical inquiries remain taboo, but there's nothing to stop an employer from obtaining medical information about a person, including genetic data, after making a conditional offer of employment. A pre-employment physical and blood test (which might include a genetic test) might also be part of the picture. In such cases, "Trying to prove you didn't get the job or promotion because of genetic information is nearly impossible," says Rothenberg.

The passage of the Health Insurance Portability and Accountability Act of 1996 also has affected the workplace. It expressly prohibits a group health insurance plan from using genetic information to establish rules for eligibility or continued eligibility and goes on to say that genetic information shall not be treated as a pre-existing condition in the absence of a diagnosis of the disease. However, it too lacks key protections. The burden would fall on the employee to prove that the insurer had used genetic information to deny coverage, and it does nothing to prohibit an insurer from raising rates or excluding all coverage for a particular condition.

Weigh the assets and liabilities of testing.
At present, 10 states have enacted laws addressing genetic discrimination and privacy within the workplace. For example, Iowa's law requires probable cause for all testing. In Ohio, health insurers can't ask applicants for previous genetic test results or require a test as a prerequisite for insurance. Some states, such as Rhode Island, require reasonable cause for employees but have no provisions for applicants with conditional job offers. Says Rothenberg: "Many of the laws apply only to specific gene mutations for specific disorders. Others prevent discrimination as a result of genetic testing but don't apply if an employer or insurer obtains the information from an outside source, such as a medical record."

Despite a lack of hard evidence indicating how many people lose jobs or insurance because of an inherited medical condition, lawmakers are beginning to devote time and energy to tackling the issue. Several bills banning discrimination and broadening privacy protection have been introduced in Congress. That pleases many, such as attorney Laden, who say that more than 99 percent of all genetic testing administered in the workplace is unnecessary.

Yet new laws alone can't solve the problem. Some observers, including Westin, believe that a common-sense approach is essential. Government should ensure a fair playing field and nothing more, he insists. "It's not appropriate for Big Brother to dictate what risks an individual should and shouldn't assume and where a person should and shouldn't work," he says.

The main thing, says Hudson, is to ensure that the information is used in a positive way-and that the individual retains control over his or her genetic records. "Accumulating this information is an asset but also a liability," she says. "In a medical context, it can prove highly beneficial. But it can also be used by a whole range of social institutions to deny insurance, employment and promotions." Ultimately, it's up to companies and human resources departments to institute programs that respect the rights of applicants and employees. As the price of genetic tests drops from several hundred dollars to less than $100, it's sure to become more common. Says Kane: "If employers use genetic information in a reasonable way, then they won't be shackled with overbearing legislation. If they choose to ignore public and employee sentiment and misuse the information, they'll agonize over this issue for many years to come."

Workforce, July 1997, Vol. 76, No. 7, pp. 38-44.

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