What Effect Does Gene-Screening Have?

"The medical community is not set up for this," said Brody.

Additionally, Brody said, there was a need to make sure that even basic health advice was written differently to people with certain genes.

The concern, he explained, was that a patient with a slight genetic susceptibility for heart disease and a patient without that risk should both exercise and avoid unhealthy eating, but if given the same advice, they might not understand the purpose of genetic testing and choose to ignore their results altogether.

For many other genetic susceptibilities though, Brody expects the study to take a closer look at what tests are used and whether certain people really have to undergo those screenings.

Brody also gave the example of Jeff Gulcher, the chief scientific officer for the genetic diagnostic company deCODE, who underwent genetic screening and learned that he was at risk for prostate cancer.

Gulcher promptly underwent a screening for prostate cancer. And even though, in his late 40s, he was not old enough for screening to be routinely recommended, the disease had progressed to the point where he may have died before reaching the recommended screening age of 50.

"Potentially that was a good thing, but when you go forward, you have to decide whether society's going to pay for it, and is this really a good thing?" said Brody.

Clearly some believe that it's not. While many see gene testing as a positive, a significant number of patients choose not to undergo genetic testing. One other goal of the Multiplex Initiative is to figure out who does and does not want to undergo these tests.

"We will know what, if you ask 2,000 people if they're interested in this, what the demographics and characteristics are of the people who say yes," said Brody.

Thus far, genetic testing has focused largely on diseases where steps can be taken to avoid them. But even then, some people would rather avoid having even those risks hanging over their heads.

"There are absolutely people who don't want to know. They want to take their chances," said Stopfer.

That choice, ultimately, is left up to the individual.

"People need to look it in the eye and decide: Is it worth living with the knowledge," said Stopfer, "or is it better to leave it lie?"

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