Social Factors Impact Interest in Genetic Testing for Cancer

WASHINGTON—A new study suggests that most members of families affected by familial testicular cancer would be interested in a genetic test for the disease if one existed. However, social factors significantly affect the degree of interest. The study is the first to look at hypothetical interest in genetic testing for familial testicular cancer.

"The majority of participants in families with multiple cases of testicular cancer expressed interest in having a genetic test within 6 months, should such a test become available," said Jennifer Loud, MSN, CRNP, of the National Cancer Institute's Division of Cancer Epidemiology and Genetics, who presented the findings at the International Union Against Cancer's World Cancer Congress (abstract 86-28).

The researchers, led by NCI's June Peters, CGC, evaluated the interest in a hypothetical genetic test among 229 family members, including 64 men who were survivors of familial testicular cancer, 66 unaffected men, and 99 women. The participants came from 47 families with multiple cases of the disease. They found that the majority (66%) would be interested in a genetic test if one became available in the next 6 months. Affected men, unaffected men, and women all had the same level of interest.

But participants were significantly more likely to be interested if they were younger and had high levels of social support. A physician recommendation was also associated with greater interest in testing as was "cancer distress," as measured by the Lerman Cancer Worry Scale and the Impact of Events Scale. And participants who felt a need for information to guide the health care of children were also more likely to be interested in genetic testing. On the other hand, concern about insurance discrimination was significantly associated with lower levels of interest.

The authors conclude that most family members would be interested in a genetic test. "With this is mind, there will continue to be a need for genetics education for health care providers to improve their abilities to identify high-risk individuals and families and to actively collaborate with genetics professionals in the risk management of this special population," Ms. Loud said.

The researchers next plan to look at the participants' knowledge about testicular cancer and genetics. They also continue to participate in the International Testicular Cancer Linkage Consortium's effort to map a testicular cancer gene in familial testicular cancer.