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Jefferson adds a new employee perk: Free genetic testing

The tests could offer early detection and treatment of cancer and heart problems. They could also be scary.

A genetic testing kit from Color Genomics.
A genetic testing kit from Color Genomics.Read moreColor Genomics

One of the region's largest health employers is offering its more than 30,000 workers an unusual new benefit: free genetic tests.

Jefferson, the combination of Jefferson Health and Thomas Jefferson University, told employees in mid-October that they could take a panel of genetic tests that flag people at higher risk for certain cancers and heart problems, as well as those who may metabolize medications in unusual ways that could make them candidates for different dosing or alternative drugs.

By Monday, 3,583 had accepted the offer. Many were asking if spouses could take the test, too. They can't this year.

"The interest is really, really high, even higher than we had anticipated," said Karen Knudsen, a molecular biologist who is the enterprise director of Jefferson's Kimmel Cancer Center. She said she hoped the extra information would help prevent disease in at-risk employees and vowed that the health system, which is self-insured, would eventually pay for extra screening tests such as mammograms or colonoscopies, or preventative medications for employees who discover they have the potentially dangerous genes.

The testing will be done by Color Genomics Inc., a five-year-old California-based firm that has turned employee genetic testing into a trend. At one company's request, Color offered genetic tests to employees about two years ago, CEO Othman Laraki said.  Now, more than 100 employers offer the benefit, including Salesforce, Levi Strauss, Visa, and SAP, whose U.S. headquarters is in Newtown Square. Overall, 30 percent to 40 percent of employees at those companies have chosen to undergo the testing. Companies pay about $349 per test.

The interest in testing comes as many people are purchasing consumer genetic-testing kits from companies such as 23andMe and Ancestry. Tests from Color Genomics have the advantage of being valid in a clinical setting — Knudsen said doctors would have to order tests to double-check results from the consumer test-kit companies — and they come with free telephone sessions with genetic counselors. Results can be confusing or frightening, and many online purchasers may underestimate the potential emotional impact of learning they are at high risk for a deadly disease, particularly one for which there are no good treatments.

Jefferson also is allowing its employees to schedule meetings with its own genetic counselors.

"They're curious about it anyway," Knudsen said. "We're giving them access to something they wanted."

Bruce Meyer, president of Jefferson Health, sees other potential benefits. The tests, he said, are a message to employees that the health system cares about their long-term well-being. He hopes that attitude will foster loyalty. "We think of this as a long-term investment in sort of the stickiness of employees within our system," he said.

He's also interested in "bending the cost curve," although it remains to be seen whether the program will do that. In the short run, costs for screening tests and treatments may rise. But that extra effort could prevent or delay expensive and disabling cancers, strokes, and heart attacks years from now. Meyer said it may take 10 years to see a financial benefit.

Laraki pointed out that the extra care would only be for high-risk people, the ones most likely to need expensive care in the future.

Jefferson also is planning a clinical trial in which cancer patients would take genetic tests that could inform decisions about their disease. Meyer said the system might try the tests more broadly in patients but wants to see how the project works with employees first.

Geisinger Health System began rolling out a genetic-testing program for employees, then patients, in July. The system is doing broad genetic testing but only focusing initially on 60 genes that raise cancer and cardiac risk, said Christa Martin, professor and scientific director of the Geisinger Population Health Screening Program.

So far, 150 people have ordered the test at no cost to them. Martin expects that 2 percent to 4 percent will be positive for one of the genes. The system's goal is to offer the test to all of its 1.5 million patients.

Employee testing raises obvious privacy concerns. Would you want your boss to know you're at high risk for breast cancer or a heart attack?

Knudsen said that Jefferson will not see any individual genetic data, and that employees can decide when their samples are destroyed. The health system had the option of receiving aggregate data about the population, but decided against doing even that. "That's not our vision," she said.

Laraki said people who take the test can opt to allow the company to keep their data so they won't have to give another sample when new tests become available. Color Genomics never sells the genetic information but, with permission, shares it with research data sets. "It's your genome, and it's our job to manage the data for your benefit and your health," he said.

SAP started offering genetic testing to its 18,000 U.S. employees in July 2017, said Jason Russell, who is in charge of compensation and benefits. He thought SAP's technologically savvy workers might be especially interested in their genes and hoped the extra information would give them another reason to take care of themselves. About 30 percent of the SAP work force has taken the test. Russell said he heard from others who preferred not to know or to wait until they had a problem.

Over 6 percent of the employees tested positive in the first three months for one of the cancer genes, more than Russell had expected. He suspects that's because people who were worried about their family histories were first in line. He said he was anxious when he got his own test results but pleased that he was negative for all the problem genes.

So far, costs have not increased, and Russell sees the program as a success. "I've had such positive feedback over this program," he said.

Jefferson's test package includes 30 cancer genes, 30 heart genes, and 14 associated with medication metabolization. The cancer test includes the well-known BRCA mutations that increase breast cancer risk, plus others for Lynch syndrome, which increases risk for colon, endometrial, ovarian, kidney, and other cancers. The heart genes tested raise risk of sudden heart stoppage, heart-rhythm problems, and high cholesterol that starts early in life. Meyer said employees will also get tests for lactose intolerance and response to alcohol. People who flush when they drink, he said, are more susceptible to alcohol poisoning. The package does not include genes that raise the risk for Alzheimer's or other neurological diseases for which there is no good treatment.

>> READ MORE: With BRCA testing on the rise, insurers balk

Beth Peshkin, director of genetic counseling for Georgetown University Lombardi Comprehensive Cancer Center, said experts are learning that many risk genes are more common than was previously thought and that some people who have them do not have the kind of family history that usually concerns doctors. People who take these tests should be prepared for surprises.

"I guarantee you that, for some people who are tested, this is going to come out of the blue, and it's going to change their medical management," she said. That could mean earlier and more frequent mammograms and colonoscopies (starting at age 20 to 25 in some people), plus earlier testing for cholesterol and more thorough heart exams. Lifestyle changes, like not smoking, eating healthy food, and exercising, can lower risk.

Peshkin stressed that negative tests, particularly when there is a family history of disease, do not necessarily mean that people are home free. They still need regular screening tests.