Genetics and insurance

I was pleased to read the commentary by Bartha Knoppers and Yann Joly1and the accompanying article by the Canadian Genetics and Life Insurance Task Force.2 I agree that there is an urgent need to systematically address the issues of genetic risk and insurability in the Canadian context. Although 90% of people are insured at standard premiums,1 there is a growing perception among many of those who undergo predictive (presymptomatic) testing that their test results may have negative consequences.

Consider the following recent clinical scenarios: a health care provider who works full-time for an insurance company requests anonymous testing for BRCA1 (a gene associated with higher risk of breast and ovarian cancer); a man at risk for a neurodegenerative disease registers in a genetics clinic under an assumed name and pays out-of-pocket for genetic counselling and DNA testing; a specialist uses a code word indicating a positive result on a genetic test when referring a patient for prophylactic surgery; women with positive test results for BRCA1 or BRCA2 request that no copies of test results or medical recommendations be sent to their physicians; other women at risk for BRCA1 or BRCA2 either decline to undergo testing or refuse to disclose the results of testing to relatives (including children).

Fear of insurance discrimination is adversely affecting medical care in this country because patients in such situations perceive that the results of genetic testing could compromise their ability to obtain insurance. Whether the risk is real or imagined, the perception of risk is preventing these patients from accessing appropriate care. I wholeheartedly support a moratorium on the use of genetic information by insurance companies and the formation of an independent body to study the issue and make recommendations.

Wendy S. Meschino Clinical Geneticist and Associate Chief Genetics Program North York General Hospital Toronto, Ont.