Genetic testing motivates behavior changes in families with melanoma risks, study says
(KUTV) — A new study led by the Huntsman Cancer Institute found that genetic testing motivates behavioral changes in families with risks of developing melanoma.
The new study - led by HCI researchers from the University of Utah and in collaboration with Northwestern University and Oregon Health and Science University - investigated whether genetic testing would motivate people at risk of developing the most severe type of skin cancer to change their behavior in order to reduce risk. The study was published Thursday in "Genetics in Medicine."
“We are trying to understand whether a genetic test result adds value over and above what can be achieved by patient counseling alone,” stated study co-author Dr. Lisa G. Aspinwall, HCI researcher and professor of psychology at the U of U. “A genetic test result is concrete and highly personalized. We thought this would be more motivating for difficult behavior change than information about risk based on family history alone.”
The Utah Behavior, Risk Information, Genealogy, and Health Trial (BRIGHT) study focused on families with a high risk of melanoma, where individuals enrolled had three or more family members diagnosed with the skin cancer. The BRIGHT research team included genetic counselors, psychologists, a dermatologist, photobiologists and an atmospheric scientist.
The team examined the changes in sun exposure following genetic counseling and test reporting, along with objective measures to track individuals with a special wrist device to measure ultraviolet light exposure and a laser that measured skin tone to assess the degree of tanning.
Participants between the ages of 16 and 70 were recruited from melanoma-prone families of two types: those with a known cancer-causing gene called CDKN2A and families with comparably high rates of melanoma but no identified CDKN2A mutation. According to a press release from the U of U, university researchers previously discovered that those who carry an inherited mutation in the gene are rare, but those individuals had a risk up to 76% of developing the skin cancer in their lifetime.
Dr. Sancy Leachman - co-author and director of the melanoma research program at Knight Cancer Institute and professor of dermatology at OHSU - explained how the previous findings contributed to the study:
All melanoma has a strong genetic component, but individuals with a strong family history are at extremely high risk. They are ideal candidates for prevention and early detection measures. Making a few relatively simple changes could save their lives.
The participants received individual counseling from a licensed genetic counselor at HCI, where the sessions consisted of a few family medical history and education about melanoma risk factors, including exposure to environmental ultraviolet radiation and genetic disposition. Those enrolled in the study also received counseling and basic information on the form of skin cancer and genetic testing.
According to the press release, those with families known to carry CDKN2A were assessed through clinical genetic testing, while those with no known gene mutations in their families received information about risk based on family history alone. All participants also received identical recommendations for reducing sun exposure.
The results showed genetic counseling about highly elevated melanoma risk - both with and without test reporting - led to sustained reductions in sun exposure. Also, the results provided evidence of a unique benefit to participants who received genetic testing, where those who learned they carried the gene showed reduced sun exposure to daily UV radiation the month following counseling and had lighter skin pigmentation one year later.
“The results support the use of melanoma genetic testing to motivate people to adopt risk-reducing behaviors,” stated Aspinwall. “Previously, it was thought genetic testing wouldn’t matter because members of high-risk families already knew about their risk and were already being advised to reduce their sun exposure. Our study shows that genetic testing, paired with counseling about familial risk and its management, can be a useful tool to motivate cancer prevention behavior.”
Dr. Tammy K. Stump, co-author and Northwestern researcher in the department of preventive medicine, added:
We are especially confident in these results because we were able to use state-of-the-art objective measures of sun exposure. It’s not simply that those with the CDKN2A mutation wished to limit sun exposure—information about personal risk resulted in significant reductions in the levels of sun exposure during the year following genetic counseling.
Researchers stated their next goal is to better understand how having the knowledge of having a high cancer risk can lead to health-promoting changes in behavior rather than leading to debilitating responses, stated the press release. They're also seeking to improve education so the public understands that a suntan is a sign of skin and DNA damage, which can lead to melanoma.
The study's findings and future work will help guide the development of counseling techniques, including optimal follow-up and integration into a patient's healthcare routine.
"Genetic testing is becoming more common in healthcare, but we still don’t know a lot about how and when to deliver this information in a manner that promotes healthy behavior changes," Stump stated. "This study is an example of the type of research needed to guide decisions about genetic test disclosure in clinical settings."
