This section reviews the literature examining risk reduction and early-detection behaviors in individuals with heightened risk of melanoma resulting from their family history of the disease and in individuals from hereditary families who have been tested for melanoma high-risk mutation status. The review also addresses risk perception and communication in individuals at heightened risk of melanoma.
Motivation and Interest in Genetic Testing for Risk of Melanoma
It's natural to want the very latest treatments when you have a serious health condition like metastatic melanoma. One way to get those cutting-edge drugs is to sign up for a clinical trial.
Before you enroll, you'll want to learn all you can about the study, what's being tested, and the risks and benefits. Work with your doctor to get that information and make sure the trial is a good fit for you. But first, get to know what's involved.
Few studies have examined motivation and interest in genetic testing for melanoma risk. In summary, the findings include the following:
High, but not universal interest in genetic testing.[1,2,3]
Articulated benefits of testing among those at heightened risk.[1,2,4]
A relative lack of examination of potential limitations of testing or reasons to forgo testing.[1,2,3]
In Australia, a qualitative study (N = 40) found that almost all participants with a strong family history of melanoma were interested in genetic testing.[2,5] Genetic testing was favored by the participants as a means to gain information about their children's susceptibility to melanoma, to increase their understanding of their own risk, to advance melanoma research, and to provide increased motivation for sun-protective behavior.
A Dutch study examined interest in CDKN2A testing (p16-Leiden mutation). Of 510 letters sent to members of 18 p16-Leiden-positive families recruited from the Pigmented Lesions Clinic at the Leiden University Medical Center in the Netherlands, 488 individuals responded by attending clinic for physical examination; an additional 15 family members also accompanied these individuals. Of these, 403 individuals were eligible for genetic counseling. A total of 184 family members followed through with counseling, and 141 of them opted for genetic testing. After the counseling session, 94 individuals returned a completed questionnaire. Older age predicted higher interest in genetic testing; reasons for having genetic testing included learning personal risk (57%) and learning the risk of one's child carrying the mutation (69%). Most participants (88%) felt that genetic testing would make a contribution to diagnostics within their family. However, some individuals (40%) reported that they had not expected to receive risk information concerning pancreatic cancer, and half of the participants (49%) reported increased worry about the possibility of developing pancreatic cancer. Finally, in an Arizona qualitative study of 22 individuals with a strong family history of melanoma, none elected genetic testing even though it was provided as an option for them.