Genetic testing in the workplace

The impact on costs and ethics could be significant

O.J. Simpson hates genetic testing.

When evidence recovered from the crime scene of the grisly double murder of his former wife and another man was tested, it came back as a genetic match to Simpson and led to one of the most infamous court trials in history. That was 1994 and it marked the first time genetic testing entered the mainstream.

A lot has happened since then. Science has finished mapping the human genome and has a blueprint of human DNA, short for deoxyribonucleic acid, the protein-based building block of life. While there’s still plenty of work to be done, the groundwork has been laid for changes to the way diseases are detected and treated and this could have a significant impact on workplace benefit programs in terms of both costs and ethics.

“We’re still at the very, very early stages,” said Charlie Black, former senior advisor of insurance operations for the Canadian Life and Health Insurance Association. “A lot of publicity has ensued with completing the genetic mapping but that’s just the beginning. It’s just like finding there is a key to the lock, but the door hasn’t been opened yet and there’s still a lot of research and exploration to do.”

Black said companies already struggling with skyrocketing drug prices could see costs soar even higher as pharmaceutical companies develop new medicine using the DNA blueprint. Breast cancer is one example where researchers have identified one of the gene mutations associated with certain types of the disease. Pharmaceutical companies are exploring this area and researchers will likely identify medication that can be tailored to an individual rather than just for breast cancer in general.

“It’s almost like knowing if someone is allergic to penicillin — what drugs work for one individual doesn’t necessarily work for a second individual,” he said. “At this point, medical science has limited knowledge as to why that is but the expectation is that the genetic research will answer at least some of those questions, so there are many new drugs being developed all the time that are fairly expensive.”

But these increased drug costs should be tempered by decreases in the cost of other benefits programs such as workers’ compensation and short- and long-term disability as medication becomes more effective in treating and preventing disease.

“A lot of conditions that used to require hospitalization are now treatable with drugs,” said Black. “That person can keep coming to work and isn’t disabled for a period of weeks or months recovering from more invasive procedures.”

He said common conditions like epilepsy and diabetes are now well-controlled by medication, enabling people to continue working where in the past they might have been off work drawing disability benefits. The cost of life insurance is also decreasing as people live longer, he said.

What's the impact on group benefits?

Most group benefits providers don’t collect much information on individuals covered by traditional employer-paid plans. But as more organizations make the move to flexible benefit plans, genetic testing could play an important and controversial role.

“Particularly in the large amounts of voluntary insurance that is available under some benefit plans, that’s very close to individual insurance in terms of the amount of choice an individual has,” said Black.

For example, if a plan allows an employee to buy $500,000 of life insurance, the insurance company would probably collect health information on that employee in much the same way as if that person came in off the street.

Another issue is who pays for the genetic tests to be done — whether it’s the public sector that picks up the tab or if it’s left to individuals and the private sector.

“If it’s the latter, then the question becomes ‘Would employee benefit plans approve the cost of genetic testing itself as a benefit?’ and ‘What impact would that have?’” said Black.

He said it would certainly add costs immediately, but it may be worthwhile down the line in getting a better handle on an individual’s health.

And while it may seem genetic testing will push costs higher, there are some less obvious benefits that could help contain costs. Take the case of a male worker whose father and grandfather both died at young ages of heart disease. Typically, an insurance company would charge him a higher rate or possibly decline coverage because of the family history.

“But if that person has genetic testing done, and the results come back to say the individual does not have that genetic predisposition, then the insurance company can go ahead and issue that insurance,” he said. “So it can have a favourable impact.”

Ethics

The technical side of genetic testing and the financial impact it will have on organizations is just one part of the equation. The other part is the effect it will have on morale if workers are asked to provide a genetic sample.

Chris MacDonald, an assistant professor of philosophy at Saint Mary’s University in Halifax, said employers could be sending the wrong message to staff. For example, a workplace that has a lot of hazardous materials could conceivably test staff to see if they have the genes that show an increased susceptibility to certain hazardous chemicals.

“One of the messages here is that you’re the problem, the workplace isn’t,” he said. “By focusing on what’s wrong with the employee, you get to not focus on what’s wrong with the workplace environment. Rather than clean up our mess, we’d rather select just the right kind of employee.”

But that doesn’t mean employers have evil intentions when it comes to genetic testing. Using the above example, MacDonald said employers may want to send the message that they’re trying to avoid exposing the employee if they are susceptible to the toxins.

“In principle, you’re talking about something that could be beneficial to the employee too,” he said. “If you’re particularly susceptible to certain carcinogens then it’s good for you if we get you away from this danger. If I were the employee, I would see both of these motives at play unless the action is done in such a way that only one of these motives is a plausible explanation.”

Another challenge is what employers and insurance companies do with employee information. For example, a woman who tests positive for the mutation associated with certain kinds of breast cancer won’t necessarily contract the disease.

“It just says she’s more likely than the rest of the population to get breast cancer,” said MacDonald. “So you’re getting information about an employee or potential employee that now tells you that they have an increased risk of some health problem but they don’t actually have that health problem.”

There are exceptions such as Huntington’s disease, a degenerative neurological disorder. Anyone who tests positive for the gene associated with Huntington’s will contract it at some point. Doctors won’t be able to tell the individual when the disease will strike, only that it’s certain it will.

“Once the symptoms hit it would be a very bad thing, for example, for a pilot,” he said. “But in the meantime, you could be a perfectly good pilot when you’re pre-symptomatic.”

MacDonald said employees should be worried about what employers will do with the information, because it can easily be misused since there is not a lot of understanding of genetics.

“Once this information is in the hands of an HR department, are they going to make legitimate uses of that information or are they going to be misunderstanding it?” he said. “They could say, ‘Oh well, this person has the gene that causes breast cancer and that means there is going to be extra costs to our health plan and that means we shouldn’t hire them.’”

The right now to know

There is little to suggest that anyone is arguing for mandatory genetic testing. The Canadian insurance association’s official policy (see sidebar) specifically states, “insurers would not require an applicant for insurance to undergo genetic testing.”

This is key because many individuals have no interest in knowing what might happen to them in the future.

“Some people have referred to it as a right not to know,” said MacDonald. “Some people who are in families with strong histories of Huntington’s or a strong history of Alzheimer’s have said, ‘No, I don’t want to know. I don’t want to be tested when offered that testing because there’s nothing I can do about it anyway. There’s no treatment, no cure so why would I want to know?’”

If individuals are forced to undergo genetic testing, the employer has information the employee doesn’t want to know and doesn’t want anyone else to know.

“Very few information systems don’t leak somewhere,” said MacDonald. “So there are definite problems about the employee wanting to have control over that information and not wanting anyone else to know.”

Both MacDonald and Black said genetic testing is in its infancy and it’s tough to predict what will happen in the future. But there’s no doubt it will have an impact on how both employers and group benefits providers do business once hurdles such as cost and understanding are cleared.

“The science is pretty sloppy at this point,” said MacDonald.

Even O.J. Simpson — who was acquitted despite the genetic evidence — would agree with that.

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