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Roll Over, Beethoven Your Genetic Profile's in

MANAGED CARE June 2000. © MediMedia USA
Ethics

Roll Over, Beethoven Your Genetic Profile's in

Michael S. Victoroff, M.D.
MANAGED CARE June 2000. ©2000 MediMedia USA

Michael S. Victoroff, M.D.

"Welcome, Herr Beethoven. As the human resources director of the Vienna Orchestra, I have been honored to meet many talented applicants for the position of apprentice composer. Your aptitude tests show you to be one of the most gifted young people we have seen in many seasons."

"Thank you, Maestro."

"Your audition impressed the selection committee. Composing would have been an excellent career for you."

"What do you mean, 'would have been,' Maestro?"

"Young man, I'm afraid I am the bearer of unhappy news. You see, we have also reviewed your pre-employment health appraisal."

"I assure you, Maestro, I never inhaled — "

"No, my boy. I'm talking about your genetic profile. I am profoundly sorry to inform you that you are beginning to lose your hearing. Our analysis shows that you will be significantly deaf before you are 30 years old. Obviously, this predisposition makes you quite unsuited to a career in music."

"Mein Gott!"

"I regret that there is nothing we can do but steer you toward another career. I can offer you a position in our complaint department."

"But Maestro, wouldn't deafness put me at a disadvantage there, also?"

"Actually, it's an advantage."

"Maestro, I hesitate to question a policy which has obviously been rigorously evaluated. But how reliable are your data? After all, there are many paths my future could take, despite a predisposition to chronic disease. For example, a therapy might be discovered at any moment that would make this risk irrelevant. And, don't environmental factors mitigate genetic risk? The average person carries half a dozen lethal genes, which are rarely expressed."

"Good points, young man. True, we're working from indirect evidence. But it only makes sense — from a risk management standpoint — to avoid employees with known health risks. We can't say which employee will become ill on a given day. But, over time, statistical projections are reliable."

It's a novelty

"But, Maestro, connections between genetic data and workplace performance are extremely tenuous. There are thousands of other factors. You mustn't put disproportionate emphasis on one item simply because of its novelty."

"We must flow with the times, son. Imagine if we didn't inquire into employees' health status. We might be exposed to liability for not knowing something that someone claimed we should have known. Suppose you had a genetic predisposition to carpal tunnel syndrome? We couldn't let you play the piano all day. You might hold us liable for a disability we should have foreseen."

"Shouldn't I be able to choose one job over another that might be 'safer' for me? Other people take jobs that expose them to heavy machinery, stressful hours, and bad weather. You simply have to pay people more, to accept more risk."

"Salary is based on many factors besides risk. And, why should we pay you more for taking a risk for yourself that isn't so risky for someone else? For example, we don't allow pregnant women to work around wood polish fumes. Doing monthly pregnancy tests on our female violin polishers is costly, but it protects us from some potential liability for birth defects."

"But employers aren't entitled to know something as private as that! And a connection between wood polish and birth defects has never been shown!"

Someone has to pay

"Of course not! But the courts aren't about to wait for real evidence in these high-profile cases with so many people clamoring for compensation."

"Still, genetics is only one factor in disability. And disability itself has a complex relationship to work performance. Injuries and nongenetic illnesses cause much more lost work time than inherited disorders."

"That may be true. But we are a self-insured company. Budgets are tight. Anything that gains us economic efficiency will help us survive into the future. If we can eliminate applicants who might tend to raise our costs — either in health care or other categories — we'll have an advantage over other orchestras that don't screen."

"Everyone but the ones screened out."

"What was that? Speak up, young man! I'm getting along in years, you know."

"I meant, sir, that every orchestra — every organization including insurance companies — currently pays for genetic illnesses in the normal course of doing business. The costs are already built into the economy. Right now, they're spread around pretty randomly. Only by screening does an organization distort the inherent justice of our remaining ignorant of genetic risk. If we simply outlawed genetic discrimination, then total costs wouldn't change. And we could all continue to work merrily along, with any costs attributable to our genetic conditions submerged in the background of all health costs."

"You're partly right, but don't be naïve. Overt screening isn't the only issue. Preventing covert genetic discrimination is far more difficult. Isn't it better to announce up front that we follow a screening policy, rather than to base decisions on subjective factors like, 'managerial discretion?' For example, everyone knows your father is an alcoholic — "

"I beg your pardon!"

"I didn't learn this through a violation of your privacy. My friend Hans was with your father a few weeks ago, and your father confessed it to him. You can't blame me for something that's public knowledge."

"Still, I think I shouldn't have to suffer from predictions based on incomplete, or invalid, or prejudicial information."

"I'm very sorry. We've decided to offer the position to Mozart. He's just 34 years old, with a sparkling genetic pedigree and doubtless a long, illustrious career ahead of him. Unfortunately, Herr Beethoven, you are simply not destined for a life of music."

Michael S. Victoroff, M.D., is medical director for Aetna U.S. Healthcare of Colorado. He had practiced family medicine for 19 years and has served on numerous hospital and organizational ethics committees. He also chairs the committee on medical informatics of the Colorado Medical Society. The author's opinions do not necessarily represent opinions or policies of Aetna U.S. Healthcare, its management, or its employees.