Embargoed for release after 2 p.m. ET, Tuesday, Nov. 6, 2001

WASHINGTON, D.C., Nov. 4 – New research suggests that while fears of insurance discrimination and high test costs are factors in some women’s decisions to decline breast cancer genetic testing, the majority of those who decline the test may be doing so because pre-test counseling helped them better understand their genetic risk.  A study on the topic is being presented this week at the 20th Annual Education Conference of the National Society of Genetic Counselors.

“Many studies have focused on why patients choose to have testing for BRCA1 and BRCA2, not why they don’t have testing,” said Lisa Dellefave, genetic counselor, Northwestern University.  She conducted the study at the University of Minnesota, Minneapolis. “Genetic testing is not cut and dried.  It’s not as easy as going to the doctor’s office, getting tested, and that’s the end of it.  There are a lot of psychological issues involved.”

In a study of 24 patients who had received genetic counseling for a family history of breast cancer and decided not to undergo genetic testing for BRCA1 and BRCA2, 12 percent of respondents said that they feared health and life insurance discrimination.  Another 12 percent cited the high cost of the test.

“While genetic tests are not always covered fully by health insurance, states and federal governments are doing a pretty good job of protecting patients,” said Kathy Schneider, incoming president of the National Society of Genetic Counselors (November 2001) and author, Counseling about Cancer: Strategies for Genetic Counseling.  “There is protective legislation against discrimination in 40 states, and initial fears about widespread, blanketed health care coverage denials because of the findings of a genetic test are just not proving to be true.”

Understanding Risk Leads Some Women to Decline Breast Cancer Genetic Testing – Page 2

The University of Minnesota study findings also confirm the benefits of genetic counseling in empowering consumers and reducing unnecessary or premature tests. Nearly 1 in 4 study participants (24 percent) declined genetic testing because they preferred to have an affected family member tested initially to limit multiple interpretations of a negative result.

“Most patients who come in for breast cancer testing believe they have an extremely high heredity risk of breast cancer and that they’re going to get breast cancer no matter what,” Dellefave said. “During a counseling session we’re able to address and often diffuse individual concerns, assess a patient’s actual risk and help them determine whether or not they are a good candidate for genetic testing.”

For example, many people don’t know that their father’s side of the family is important in assessing breast cancer risk, Dellefave said.  Others believe that if their mother has breast cancer, they will get it; yet if the mother is the only person in the family with cancer, it’s probably sporadic rather than genetic.

About 15 percent of study participants declined testing because there was a low chance for a mutation in BRCA1 or BRCA2 to be detected in the family.  Yet another 12 percent said they declined the test because they would be unable to obtain a 100 percent conclusive result because a BRCA1 or BRCA2 mutation had not already been identified within the family.

Co-authors of a paper on the topic being presented by Dellefave are: M. Ahrens, R. King and J Kahn.

The National Society of Genetic Counselors (NSGC) is the leading voice, authority and advocate for the genetic counseling profession. Approximately 2,000 genetic counselors are members of the NSGC. Genetic counselors are health professionals who have specialized graduate degrees and experience in medical genetics and counseling.

TO FIND A GENETIC COUNSELOR:
Consurmers can locate a genetic counselor in the U.S. or abroad by visiting www.nsgc.org and clicking on Resource Link.  Searches are available by geography, last name or institution.

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For more information, go to the Public Health Perspective Page on Breast and Ovarian Cancer Susceptibility