A new study by Anita Kinney, associate director at the UNM Cancer Center, finds over-the-phone genetic counseling for breast and ovarian cancer to be just as effective as in-person counseling.
Kinney said over-the-phone genetic counseling empowers those at risk with life-saving information.
Across the country, less than 35 percent of at-risk people get genetic testing and counseling, she said. Less than 10 percent of those who carry the cancer causing gene mutations, BRCA1 and BRCA2, know they have it.
Those with the gene mutation have up to a 44 percent increased risk of ovarian cancer, Kinney said. As many as 9 in 10 women who carry the mutation will get breast cancer.
Kinney said women who have had breast cancer have up to a 64% risk of getting a second case breast cancer, while men have a risk of carrying the mutation and passing it on to their offspring.
Men with the mutation are at increased risk for breast, prostate and other types of cancer, she said.
Kinney said genetic counselors assess an individual’s risk based on their personal and family history, as well as medical records. The assessment involves questions such as the age at which cancer was diagnosed in the family member affected, if it was breast cancer and if it occurred in both breasts.
Based on the assessment, counselors may recommend genetic testing and/or preventive strategies, she said.
Screening can detect cancer earlier, but cannot prevent cancer, Kinney said, as there is no effective strategy to screen for ovarian cancer. The only and best way to manage the risk for women who carry the gene mutation is removal of both ovaries.
The findings of her study are important because telephone counseling was previously controversial, she said.
“Providers felt over-the-phone counseling was inferior and that it could cause harm,” Kinney said.
The findings show that telephone counseling did not increase psychological consequences or depressive symptoms. Distress levels were the same between in-person counseling and telephone counseling.
Some women preferred to receive genetic counseling in-person, while others felt they had more privacy over the phone, Kinney said. With findings like this, genetic testing companies developing across the nation are now offering telephone counseling.
Over-the-phone genetic counseling helps women who don’t have access to genetic counselors in their towns, she said. Instead of commuting to a clinic and missing work, they can receive counseling on their lunch break or before or after work.
Over-the-phone genetic counseling also benefits those who live in larger cities where there are not enough genetic counselors to go around, Kinney said.
Dr. Kinney said one woman who participated in her study didn’t think genetic assessment was necessary because she had sons.
“An important fact many people are not aware of is that hereditary breast and ovarian cancer affect both men and women,” she said.
Dr. Kinney said one man found a lump in his breast and never took preventive measures because he didn’t believe it was possible for men to have breast cancer.
Some individuals fear that the results of their genetic test will make them targets of discrimination, she said.
“Some individuals think that if a mutation is found, they can lose employment or health insurance,” Kinney said.
She said individuals are protected from such conduct under the Genetic Information Nondiscrimination Act (GINA) of 2008, which prohibits the use of genetic information for health insurance and employment.
In the past, reports were made that health insurers denied coverage to people based on their risk of cancer, Kinney said, and GINA was passed to protect those who face the risk of cancer and other diseases from discrimination.
Olivia Kell, a patient who participated in Dr. Kinney’s study, said genetic counseling ruled out her risk for the mutation after it was determined she had no relatives diagnosed with cancer under the age of 50.
The two distant relatives that had cancer in Kell’s family were diagnosed at 60-70 years old, she said, and after receiving her family’s medical records, the genetic counselor determined Kell was not at high risk for the mutation.
“I got assessed for my daughter, my granddaughter and myself. I needed to put my fear behind me,” said Kell.