Ready or not, genetic testing may be coming to the workplace

Path to the future is paved with ethical and legal roadblocks

From "Dolly" the cloned sheep to the discovery of genes for breast cancer, obesity, and Alzheimer’s disease, humankind’s growing mastery and understanding of the genetic process has captured the public imagination, igniting a volatile mixture of hope, fear, and controversy. Of particular interest to health promotion professionals are the dramatic inroads in genetic screening, which hold the promise of more precise targeting of employees at risk for a wide range of genetically linked diseases. On the other hand, warn wellness experts, it also may pave the way for "genetic discrimination" or abuse of employees’ privacy.

The prospect of a more precise method for identifying at-risk employees is certainly attractive, notes Wayne Burton, MD, vice president and medical director of First Chicago NBD, a banking and financial services organization.

"I think there’s enormous potential for genetic testing to do good — to [help us] focus, in our workplace screening efforts, on those individuals who are at the highest risk and who need more interventions more frequently," says Burton. For example, he notes, the discovery of a breast cancer gene offers the hope of more precise screening recommendations. "Right now, we don’t know which women should have mammograms at a more frequent rate," he explains. "Genetic testing, as we know, can help us hone in on those individuals."

As attractive as that prospect might be, however, the health promotion experts surveyed by Employee Health & Fitness counsel both caution and a respect for the privacy and legal rights of employees. "Sure, we would like to target more high-risk individuals," says Alison Fakhery, a member of the business development management team of Seattle-based Lexant, an integrated health and lifestyle management company. Lexant is a division of St. Louis-based Monsanto Health Solutions, a division of Monsanto Life Sciences. "But even now, when we conduct HRA’s [health risk assessments], the employee is doing it with the understanding that confidentiality is involved."

The whole area of genetic information may be fraught with legal land mines, says Fakhery, which may cause employers to shy away from genetic testing altogether.

"Do employers or health plans want to get into that business?" she asks. "For example, an employee might be fired just for being a poor performer, but because he has a certain genetic predisposition he might perceive he was being fired because of genetic test results and take legal action."

Larry S. Chapman, MPH, chairman and senior consultant for the Summex Corporation of Indianapolis, a health promotion consulting firm, strongly agrees that employers should not have direct access to genetic testing information. "It would be appropriate for the primary care physician or a managed care organization," he notes.

What employers might do, says Fakhery, is outsource the entire process to a third-party vendor (such as Lexant or Summex). "We currently conduct health assessments to identify the health status of the population and to further target those employees who are at risk for certain diseases due to lifestyle," she notes, "and put them in an appropriate risk ‘bucket’ so they receive the most appropriate behavioral modification programs involving targeted and tailored health communications."

Would Lexant add genetic testing to its offerings at some point in the future? "If the proper parameters were put in place and proper confidentiality were maintained — and if market need were apparent — Monsanto would explore the possibility with all the appropriate precautions" concerning confidentiality, Fakhery says.

Even with all due precautions for confidentiality taken, says Burton, genetic testing should not occur at the worksite. "[Genetic testing] should be done in a physician’s office, where genetic counseling can also be done," he asserts, "At this time, I don’t see where the workplace would be appropriate."

That doesn’t mean, he says, that the wellness professional should be entirely out of the loop. "What wellness programs can do is educate employees in this regard — inform the employees that certain types of genetic testing are available and that they can either consult their physician or visit specific health care centers that are set up for such testing. Once a discovery [of a genetic predisposition] has been made, the employees should be aware that they ought to participate in existing [related] workplace screenings on a regular basis."

"It could potentially be a useful tool in a more aggressive health management approach," adds Chapman. "If a nurse is working with the employee on behavioral change, it would be good to know. It would really help the interventionist know how much urgency to put on their advice."

If the company has a managed care provider, Burton advises, "They should make sure that in the benefit plan design there’s coverage where appropriate and that the managed care provider is following the existing guidelines, like we have now for mammography and cholesterol screening. [Genetic testing] could be one of those parameters employers look at in terms of quality."

While the rash of recent genetic discoveries has put a new focus on genetic testing, Burton reminds us that this type of testing is not really new. "Tests for Tay-Sachs, Sickle Cell Anemia, and Huntington’s disease have been around for a long time," he notes.

What is new is that the more recently discovered genes are for disease states that are much more common and cross all gender and ethnic lines. This raises increased concerns for employee privacy and fear of potential abuses.

Fakhery, however, believes that legislative rules already in place will help protect employees from "genetic bias." "Right now, we see some behavioral risk rating with health risks that are modifiable through lifestyle — such as cholesterol, weight, and blood pressure — with premium differentials for those employees who have chosen not to manage them, but only after an employee has been given the opportunity to change — and a supportive culture," she observes.

"However, it would be extremely unfair and unethical [to risk-rate for a genetic predisposition] because you can’t change your genetics. I think you’d have [the government] down your throat because of the ADA [Americans With Disabilities Act]."

Chapman believes the insurance industry should stay out of genetic testing. "When you apply for insurance coverage, you routinely get a blood screening; it’s very possible that in the future you could be screened for genetic predispositions," he theorizes. "That makes me nervous; it leaves people further unprotected."

Is genetic testing a practical possibility in the future? "Yes, but it would be very risky," warns Fakhery. "What you would need to validate it would be medical screening. But who will police this? Health plans? Government? There has to be a governing body." (For more information on how close we are to widespread genetic screening, see story, p. 63.)

Not so fast

While genetic testing would clearly offer the potential of identifying a whole new population of at-risk employees, James Fries, MD, professor of medicine at the Stanford University School of Medicine, in Palo Alto, CA, fears that such testing would reinforce what he sees as a dangerous trend in wellness: focusing only on those employees identified as "at-risk."

"There’s no question about the ability [of genetic tests] to predict; what I question is strategy," he warns. "In an extreme case, if we could predict cancer with great accuracy, someone might want to go in and remove an organ."

Fries sees a wrong-headed approach in many areas of health promotion today, given our current ability to identify at-risk employees. "An analogy would be serum cholesterol testing," he explains. "The theory behind the National Education Cholesterol Act is to identify those people at high risk for heart attacks, have them treated aggressively by physicians, and after that they will have fewer heart attacks. The public health approach, on the other hand, recognizes that three-quarters of the people with heart attacks have cholesterol under 240, and half have levels below 200. So, if we set up a strategy based on early identification and treatment of a quarter of the people, you will miss three-quarters of all heart attacks and will, thus, have only a limited success rate."

Fries sees another potential danger in increased genetic testing. "In a lot of models that underlie health promotion, you’re trying to get people to modify their behavior so they will modify their future health," he notes. "If you tell them things [about genetic predispositions] they may tend to think in a fatalistic way — that they can’t affect their health, so why bother? It decreases your sense of control over your life, when one of the goals of wellness is to increase that sense of control."

Besides, he says, those fatalistic conclusions may be erroneous. "Family histories are fraught with alternative explanations — such as lack of exercise or poor diet," he notes.

A negative result doesn’t mean you’re safe

The other problem with "good" screening results, he warns, is that they can create an "insidious" false sense of security. "If someone is tested and found negative, their interpretation of that result is often, ‘The Doc says my cholesterol is fine.’ Then, they go out and gorge themselves on steaks and eggs and then may be at risk."

The bottom line for Fries? "If you are really interested in improving population health, treat everybody. Regardless of cholesterol level, we should all follow a heart-healthy diet — that will reduce the risk of people with cholesterol of 180. There is no such thing as ‘no-risk’ people."

Whatever decisions are eventually made in response to genetic testing, "these decisions must be made between the employee, the family, and the physician — and based on good science," Burton insists. "I believe it will remain something between physicians and employees."

[Editor’s Note: For more information about health promotion and genetic testing, contact: Wayne Burton, MD, First Chicago NBD, 1 First National Plaza, Suite 0006, Chicago, IL 60670. Telephone: (312) 732-1164.]