Does Knowing Your Risk Change Behavior?

Knowing you have a genetic disorder that increases your risk of a disease is undoubtedly beneficial when it means there are early or increased screening recommendations. For example, an inherited risk of colon cancer may mean you need a colonoscopy sooner or more often than the general public. But what if recommendations are the same regardless of genetic risk?

When it comes to melanoma genetic testing, says Lisa G. Aspinwall, PhD, Huntsman Cancer Institute (HCI) investigator and professor in the Department of Psychology at the University of Utah, the benefits have been unclear. “If you’re a member of a high-risk family, the recommendations don’t differ. Everyone is told to reduce sun exposure and get a total-body skin exam. So that leaves open the question of whether it matters to people to know they have this heightened genetic risk or not.”

Aspinwall and her colleagues set out to answer that question. They followed a group of 37 people who all had at least three family members with melanoma. Participants received genetic testing for inherited melanoma risk. The results put people into three groups:

  • Affected carriers (those with a personal history of melanoma and the gene that increases risk)
  • Unaffected carriers (those without a personal history of melanoma but who carried the gene)
  • Unaffected non-carriers (those without a personal history of melanoma and without the gene)

The research team performed six assessments over two years. A comprehensive questionnaire asked about sun protection behaviors (such as wearing sunscreen and performing skin self-exams) and the number of sunburns the participant had, among other questions.

Sun-Smart Tips for Healthier Skin

  • Limit sun exposure between 10 a.m. and 4 p.m.
  • Protect skin with broad-brimmed hats and clothing such as long sleeves.
  • Use a mineral sunscreen (with active ingredients zinc oxide and/or titanium dioxide) of SPF 30 or higher. Mineral sunscreens reflect all UV rays and last longer than chemical sunscreens (which absorb most UV rays but quickly saturate).
  • Apply sunscreen 20 minutes before going outdoors.
  • Reapply sunscreen every two hours or after water sports.
  • Wear sunglasses with 100%
    UV protection.
  • Don’t use tanning beds or sun lamps.
  • Try not to burn or tan your skin.
  • Check skin monthly and report changes to a health care provider.
  • Consider an annual skin exam with a health care provider.
  • Learn factors that increase skin cancer risk: UV radiation exposure; skin that sunburns or freckles easily; family or personal history of skin cancer; light-colored eyes; light or red hair; many and/or unusual moles.

So did genetic testing make a difference? The results, published in Genetics in Medicine, said yes—and not just for those with a genetic risk for melanoma. All three groups reported a decrease in sunburns and an increase in daily sun protection behaviors. At the beginning of the study, 78.1% of the group reported practicing at least one sun protection behavior each day; that number increased to 96.9% two years after the genetic testing. Affected carriers, who already showed a high adherence to sun protection behaviors, maintained that adherence. Unaffected carriers and unaffected non-carriers both reported an increased use of protective clothing.

Aspinwall says some research groups believe giving melanoma genetic testing results to non-carriers may give non-carriers a sense of false security. Yet, she notes, “We in general have not seen that.” As would be expected, “The people who get the news they’re non-carriers feel tremendous relief,” Aspinwall notes, and yet perhaps most importantly, since everyone can protect themselves against skin cancer, regardless of genetic risk, “they’re not reporting decreased practice of sun protection behaviors.”

Though the number of reported sunburns decreased overall, Aspinwall and her team were surprised to learn that even members of very high-risk families reported getting sunburns two years after the genetic testing.

“We asked an open-ended question about why, and it really provided some insight into just how hard it is to protect yourself from the sun, even when you’re really trying to do so.” Aspinwall says people reported their sunscreen either washed off or sweated off, or they forgot to reapply.

“It’s really hard to get [sunscreen use] right,” says Aspinwall. “And it just underscores the need to encourage people to wear protective clothing, which you can’t sweat off.”

See the sidebar for sun protection tips from HCI’s skin cancer experts, and find more resources about skin cancers on our website:

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National Poll Shows Public Divided on Genetic Testing to Predict Cancer Riskgenetic testing infographic

A national poll from Huntsman Cancer Institute (HCI) showed 34% of respondents would not seek genetic testing to determine their likelihood of developing a hereditary cancer, even if cost was not an issue. 

Nearly 40% of those who wouldn’t seek testing reported being concerned the results would impact opportunities for employment, while 69% of that same group reported concern the results would have an adverse impact on their ability to get insurance. However, current laws prohibit such discrimination.

“I see patients every week who could have taken steps to reduce their risk if they’d known they had a predisposition for a certain type of cancer,” says Saundra Buys, MD, co-director of the Family Cancer Assessment Clinic and medical director of HCI's High Risk Cancer Research Clinics and Studies.

Buys says the survey demonstrates that more work is needed to educate the public about the type of information genetic testing provides and who should seek it. “We must also work to eliminate perceived false barriers to testing, such as concerns about insurability and employment.”

Buys warns, however, that genetic testing is only as good as the genetic counselor who accompanies it. “The results of these tests are complex, and without the benefit of genetic counseling, they can cause confusion and unneeded anxiety for patients.”

The online poll was conducted in October 2013 for HCI by Harris Interactive, who surveyed 1,202 men and women nationwide between the ages of 25-70 with either commercial or government insurance. View the infographic at right to learn more.