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Genetic test helped Utahns at risk for melanoma change behavior, study finds

SHARE Genetic test helped Utahns at risk for melanoma change behavior, study finds
When people know they have a high genetic risk of melanoma, they are more likely to protect themselves from the sun, according to a new study.

When people know they have a high genetic risk of melanoma, they are more likely to protect themselves from the sun, according to a new study.

Adobe

SALT LAKE CITY — When people know they have a high genetic risk of melanoma, they are more likely to protect themselves from the sun, according to a new study.

"For most genes that have been found for familial cancer, the primary recommendations are screening and — if it's appropriate — surgery. There aren't any other than melanoma right now where there's a personal behavior you can do to reduce your risk," said study co-author Lisa G. Aspinwall, researcher at Huntsman Cancer Institute and psychology professor at the University of Utah.

"It's something that I think is going to be useful in understanding how people respond to personalized medicine for other diseases."

There is a cancer-causing gene called CDKN2A that makes some people 35 times more likely to develop melanoma than the general population, Aspinwall said.

The study, published last week in "Genetics in Medicine," found that participants who knew they have the gene — and received counseling and information about their family history — had reduced their exposure to ultraviolet rays and had less skin damage within a year.

Meanwhile, in the control group, participants with a family history of melanoma who did not have the gene, returned after a year with improved sun protection behaviors, but not as much improvement as those with the mutation showed, Aspinwall said.

People with a family history of melanoma are twice as likely to get the condition than the rest of the population, she said.

She said the findings are important because past studies suggested that people think about genes in a "deterministic way," meaning they'll believe they're destined to get a genetic disease no matter what they do. Some researchers were concerned that if participants learned they had the mutation, it would lead them to be "fatalistic" and not take preventive steps, according to Aspinwall.

Researchers hoped to learn "whether they would see that high risk and say, 'Well, it doesn't matter, I'm gonna get it anyway.' Or say, 'No, I'm gonna follow the recommendations and reduce my sun exposure.'"

Study participants were found through a program that allows people who participate in genetic research at the institute to refer their relatives, she said.

The study took place over four years because researchers were gauging "people's behavior in the sun."

"You don't get any points for wearing long sleeves in January, you get it when it's hot like this in August," Aspinwall explained.

Each of the 128 people were followed over a year and made four in-person visits to the university, where researchers assessed their skin color and tanning with a device that reads how much light comes off a person's skin.

During the month before and after each office visit, the participants also wore wrist devices that "look like a cross between a wrist-watch and a marshmallow with a white disk," Aspinwall said. The devices record how much ultraviolet rays someone gets every 10 seconds.

Participants also completed total body skin exams, were interviewed about their feelings about their risk for melanoma, and received consultations with licensed genetic counselors about their family histories.

Aspinwall said the study was the first of its kind in that, instead of participants self-reporting their behaviors, researchers got reliable results through the skin readings.

Those who knew they had the mutation that causes melanoma changed their behavior because they saw, 'OK, now it's me. I really have to prioritize this,'" Aspinwall said the researchers learned.

She believes the results are important "for understanding how people can proactively manage their risk, whether it's familial cancer or whether it's other diseases for which people will find genetic links. … People will take advantage of this information and use it to reduce their risk."

Some people think staying out of sun is a simple change to make, "But actually doing consistent sun protection is really hard."

Protective clothing is "hot and uncomfortable. Sunscreen is slippery and expensive. … It's actually pretty difficult to do it consistently. So I think what we're seeing in terms of people being less tan one year later is really important."

She said the researchers would like to receive additional funding to follow the participants and see if their preventive behavior continues 10 years later.

The study was supported by the National Institutes of Health/National Cancer Institute, among other organizations. Northwestern University and Oregon Health and Science University also participated.