January 29, 2001 – As genetic testing for cancer and other adult-onset diseases becomes more accessible to the public, questions of privacy not only concern individuals, but also insurance companies.

Insurers suggest those who test positive for a specific gene mutation associated with a disease could perform “adverse selection,” buying high levels of insurance protection at lower premiums without disclosing results. Likewise, those who test negative in such genetic tests might engage in “creaming,” deliberately telling insurers results in hopes of securing lower premium rates.

But a new study by the University of Utah shows that women who had been tested for mutations in the breast cancer gene BRCA1 did not use their results to take advantage of life insurance companies. Funded by the National Cancer Institute, the study was the first of its kind to explore how testing for gene mutations associated with cancer affects insurance buying behavior.

“We shouldn’t race to give life insurance companies access to genetic test results because their contention that consumers will engage in strategic behaviors isn’t supported by our analysis,” said Cathleen Zick, author of the study and chairperson of the Family and Consumer Studies Department at the U. She presented the findings at a National Institute of Health conference on January 16 in Bethesda, Maryland.

Participants tested for BRCA1 did not engage in “adverse selection” one year after the test. Researchers examined each participant’s life insurance policy, the number of her plans, and their rates and values. “There were no significant differences in life insurance demand among women who tested negative for BRCA1, those who tested positive, and those who were not tested,” said Zick.

Life insurance in particular was examined because consumers tend to have more independence in choosing these policies as opposed to their own health insurance, which is more likely to be a group plan decided upon by an employer.

Investigators also looked at the likelihood of women buying cancer insurance, which is owned by only five percent of people in the U.S. but continues to gain popularity. The number of BRCA1-positive owners of cancer insurance was nearly equal to the number of cancer insurance holders who tested negative. But both groups were three times more likely to own cancer insurance than those who were not tested for the genetic mutation.

While the discrepancy may suggest test participants engage in “adverse selection,” Zick attributed the numbers to consumer education. “Just going through the process of genetic testing may make people more aware of their risks,” she said.

The study further included an examination of public attitudes toward life insurance practices pertaining to genetic disclosure. Support for insurers’ use of genetic test information is low in the general public, and even lower among those who underwent genetic testing.

Zick said the research should signal the need for caution among public policy makers. “It’s a matter of weighing the insurance industry’s concerns against the potential for genetic discrimination. A balanced public policy should be targeted to protect genetic privacy,” she said. There is no pending national legislation on genetic privacy issues, but several states have laws governing access to genetic test results. In 1999, the Utah Legislature passed the Genetic Privacy Testing Act (HB 177) restricting the use of private genetic records in insurance underwriting and employment decisions, with limited exceptions.

“The subject of genetic privacy conjures tough ethical and legal issues that society is going to have to tackle - not just relating to insurance, but also implications for employment and family life,” Zick said.