Pressing the Pause Button

As physicist Albert Einstein is thought to have said, information is not knowledge. The day is coming when patients will be able to get their genome sequenced faster than they can get their dry cleaning done. But in the ethical and legal realm, the ability to obtain genetic information is advancing faster than the ability to analyze and comprehend it.

“There’s this belief that more information is better, but that’s not always the case,” says Tim Caulfield, Canada Research Chairman in Health Law and Policy at the University of Alberta in Edmonton, Alberta. As genome sequencing becomes more common, “it’s going to produce a whole bunch of ambiguous information of unclear value.”

In cancer treatment, this means sorting out the genetics that keep a tumor alive from the genetic glitches that don’t matter. But as research reveals more genes responsible for cancer, people could start looking for cancer-causing genes before there is any cancer.

Some genes, such as the BRCA breast cancer genes, confer a high risk of disease. More often, though, the genetics of cancer are more subtle, the result of lots of errors working as a whole rather than a single gene. Knowing what to make of a 15 percent risk is more difficult than knowing what to make of an 85 percent risk.

There are people who will find out about their genome and make healthy changes, such as exercising more and staying out of the sun. (Caulfield points out, however, that even more definitive predictors of disease, such as weight and high blood pressure, commonly don’t prompt choices for the better.) More likely, it could cause people to obsess over a medical problem they don’t have—and may never get—or seek preventive treatment that might bring more harm than benefit. Or they could take a fatalistic point of view and decide if they’re going to get cancer anyway, pass the cigarettes. In these scenarios, “you’re going to get no health benefit from the information,” Caulfield says.

The legal world has yet to sort out what to do with genetic sequences or how protected the information should be. Revealing the tumor’s genetics “is producing a whole lot of information that people potentially have access to,” Caulfield says. It’s still unclear who owns the information. For example, the HeLa cell line is the oldest and most widely distributed cell line in the world, grown from a tumor sample taken from Henrietta Lacks without her consent in the 1950s. In August, the National Institutes of Health announced that it would collaborate with the Lacks family to review research proposals for access to the full genome data of the HeLa cells.

“This is exciting technology that will have real benefits,” Caulfield says, “but I don’t think it’s too late to push the pause button before we use it and say ‘What is going to be the benefit to a patient day to day?’”