Research Magazine : DNA on Trial

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SUMMER 2002
DNA on Trial
by Catherine Gianaro

Genetics may have opened the doors to new forms of discrimination. Is there a legal defense? That may depend on the state in which you live.

Imagine not getting a job solely because you carry a gene that causes Alzheimer’s or because your DNA increases your chances of getting cancer 30 years from now.

As genetics advances the limits of science, it also pushes the boundaries of law and ethics. And genetics may provide the means for an entirely new form of discrimination.

“ Once blood and urine samples are taken for an employment physical, the applicant’s genetic material is available,” said Marisa Anne Pagnattaro, a University of Georgia assistant professor of legal studies. “Employers potentially could misuse that sample and then make up some other reason for rescinding the offer.”

Pagnattaro explores the legal issues stirred up by new genetic technologies, such as genetic screening. In groundbreaking research, she has examined and compared current state and federal laws concerning genetic discrimination.

“There wasn’t a clear sense of what’s available across the country,” she said, “or whether some of the existing federal laws could be used in a genetic context.”

Pagnattaro focused on laws that protect people against genetic discrimination in the workplace. Her findings were published in the Fall 2001 issue of American Business Law Journal.

She first investigated each state’s laws to determine what employee protection was available and what could be interpreted to argue a genetic discrimination case.

“They’re all over the board,” she said, noting that protection under the law varies in focus and scope from state to state.

In general, Georgia law offers little protection for employees and there is currently no state law recourse against genetic discrimination, she said. In contrast, other states, such as New Jersey, New York and California, have laws prohibiting discrimination in the workplace based on genetic information and even restrict the gathering of genetic information.

Under federal statutes Pagnattaro found little protection available.

“There’s no comprehensive federal law that would protect an employee or potential employee in a genetic discrimination case,” she said. “However, I think some argument could be made under the Americans with Disabilities Act, although the Supreme Court’s recent decision in Chevron vs. Echazabal raises more questions and makes legislation all the more necessary.”

High court challenge

THIS YEAR, THE U.S. SUPREME COURT ruled in the case of Chevron vs. Echazabal, which answered the question of whether an employer can refuse to hire someone with a disability because the performance of the job would pose a direct threat to the worker’s health or safety.

Mario Echazabal worked at a Chevron oil refinery for 20 years as a laborer employed by maintenance contractors. When he applied directly to Chevron for a job, the company determined him qualified and extended a job offer contingent upon passing a physical exam.

But when the pre-employment physical revealed a liver condition later discovered to be hepatitis C, Chevron rescinded the job offer and also told the contractors that Echazabal could no longer work at the plant. The company maintained that exposure to solvents and chemicals would hasten his disease and eventually kill him.

Echazabal sued under the Americans with Disabilities Act claiming that Chevron discriminated against him for having hepatitis C. Chevron argued that Echazabal posed a direct threat to himself. Neither party disputed whether hepatitis C should be protected under the ADA.

The 9th U.S. Circuit Court of Appeals in California disagreed with Chevron and ruled that a “direct threat” merely pertains to others in the workforce.

Studying state and federal laws that protect people from genetic discrimination, Marisa Anne Pagnattaro found that Georgia and federal laws offer little protection for workers.

“The 9th Circuit is saying you should be able to work at a job, even though it means it may kill you,” Pagnattaro said. But in June, the U.S. Supreme Court overruled the decision, voting 9–0 that “direct threat” also applies to oneself.

Pagnattaro points out that this case has ramifications in the genetic context.

“An employer who contends that a person with a genetic propensity for cancer who is more at risk in a certain job than others could be construed as one who is a ‘direct threat’ to himself and should be barred from that job,” she said.

“It worries me that people would be precluded from doing certain types of jobs based on their genetic makeup,” Pagnattaro said. “On the other hand, we might be facing way down the road a situation where you’d want to take that into consideration.”

For example, a person who has a propensity for a particular disease that is induced by stress may take that into consideration when planning a career path. But, according to Pagnattaro, whether or not that should be self-selecting is the issue.

Former Celera Genomics President J. Craig Venter has been widely quoted as envisioning a “not-too-distant future” in which anyone can get a DVD with his or her entire genetic code on it.

“It’s a bizarre thought, but it’s really not that far off,” Pagnattaro said. “You can be aware of things to make your own choices. It shouldn’t be an employer’s position to say you can’t take this job because it might cause you to have health problems.”

Who should know — and how much?

POSSIBILITIES LIKE THIS, according to Pagnattaro, are a good reason for comprehensive, federal legislation for uniform, equal treatment of genetic information. Such legislation is pending before Congress. The Genetic Privacy and Nondiscrimination Act proposes to “establish limitations with respect to the disclosure and use of genetic information.”

At issue is how much information employers or insurers should have — and what they should be allowed to do with it.

“Employees and job applicants might be tested to detect genetic predisposition to diseases that might make them less productive and more costly for health insurance purposes,” Pagnattaro said. “If insurance companies had access to your genetic information, could they use that information to assess higher premiums by calculating your mortality based on some genetic condition?”

Not everyone is enthusiastic about laws to prevent genetic discrimination. For example, Pagnatarro notes that Michael Kinsley, formerly the voice of the “left” on CNN’s Crossfire, argues that “discrimination makes perfect sense.” He contends that health insurers, in an effort to protect against unpredictable costs, want to exclude the people who are more likely to get sick from their insurance pool.

Pagnattaro also quotes social commentator Andrew Sullivan, who argues that the “point of laws against racial bias is to outlaw irrational discrimination based on irrelevant characteristics. The point of laws against genetic discrimination is to outlaw rational bias based on relevant information.”

Pagnattaro acknowledges the point.

“It’s something that ultimately will be taken into consideration,” she said. “The question is to what degree it is appropriate. It almost becomes an ethical question more than a legal one.”

For years legal and ethics experts have been debating what would happen if companies started testing employees for genetically linked illnesses. The debate was fueled last year when the Equal Employment Opportunity Commission sued Burlington Northern Santa Fe Railway for doing just that.

The workers, who suffered from the swelling and numbness associated with carpal tunnel syndrome, filed on-the-job injury claims, prompting the railroad to conduct genetic tests to see if the workers were predisposed to the condition. If a genetic link were found, the railroad then could use the evidence to deny paying medical and lost-income benefits for what traditionally is considered an on-the-job injury.

In February 2001, the EEOC filed a federal lawsuit charging that the policy violated the ADA. Although the railroad quickly stopped the screening after the EEOC filed its lawsuit and the parties recently reached a $2.2 million settlement for the 36 railway workers involved, the case raised several ethical, privacy and legal questions. The most disturbing issue, Pagnattaro said, was that the employees weren’t told about the genetic screening during the medical exams.

“It would have been an interesting test case for the courts,” she said.

A societal question

MEDICALLY SCREENING employees is far from being a new business practice. Many private companies have engaged in random drug testing for decades. People now accept such testing as the norm, Pagnattaro said.

“Years ago, people would have been outraged about drug testing, but now employers want to know everything about their employees,” she said. “It’s amazing what people will accept.”

To demonstrate the potential problems, Pagnattaro offers Huntington’s disease as an example. A person with a genetic propensity for Huntington’s has a 50 percent chance of developing it. “They could be completely asymptomatic, but an employer could look at that and perceive it as a disability.” That information, she added, could lead to a rescinded job offer or failure to be promoted.

“You wouldn’t have even known about it if you didn’t do the genetic testing since there’s no physical manifestation of it at the point when the employment decision is made,” she said, adding that in half the cases, a “propensity” is all that ever develops.

The genetic age has ushered in a host of legal issues. Many of the long-term resolutions to these issues may be driven by science.

“It will depend on how readily available the genetic information is,” Pagnattaro said. “Right now, they can isolate certain genes, but it just depends on when they can isolate genes of particular interest to employers.

“Think of the insight it would give you into somebody’s potential,” she said. “On the other hand, consider the exclusionary abuses it could engender.”

An unnerving thought, Pagnattaro said, and one reason she sums up her research with a quotation from 16th century philosopher François Rabelais: “Science without conscience is but the ruin of the soul.”

For more information, access www.terry.uga.edu/legalstudies/faculty/information/map.html

Catherine Gianaro, a former editor of UGA’s Research Magazine, is now an award winning freelance writer based in Chicago.

THE UNIVERSITY OF GEORGIA RESEARCH MAGAZINE : www.researchmagazine.uga.edu