medical update

Insurance Discrimination & Hereditary Cancer
Barbara Boyd, MSc, CGC, CCGC
Hereditary Cancer Program, BC Cancer Agency

Have you or a relative been denied insurance because of a family history of cancer? In May 2009, legislation in the United States comes into effect that holds the potential of improving access to health care for a lot of people with a family history of cancer. The Genetic Information Non-discrimination Act (GINA) was signed into law last year and undertakes to make employment and health insurance genetic discrimination illegal.

Genetic discrimination occurs when an individual is treated differently and unfavourably because they have an inherited disorder or are at risk for one based on their family history. GINA is felt to represent a giant leap forward in the US, as it prevents health insurance companies from basing premiums and eligibility on genetic information. Family history is defined as genetic information by GINA. However the act doesn't apply to non-health insurance.

Studies have shown that fear of genetic discrimination is a common reason for individuals to decline hereditary cancer genetic testing, both in US and Canada. In Canada, with our universal health care system, having a genetic risk to develop breast cancer does not prevent one from having access to care. Instead women and men who have an identified mutation in a breast cancer susceptibility gene, such as BRCA1 or BRCA2, have access to a more intensive level of screening and prevention options for consideration.

Canada's debate about access to genetic information and genetic discrimination has focused on supplemental health insurance (i.e. extended health, critical illness) and life insurance. In polling, the majority of Canadians believe that insurance companies do not have the right to ask for genetic information. However, in Canada there are no existing federal or provincial legal documents or precedents specifically prohibiting genetic discrimination.
Life insurance is a private contract between the policy holder and the company. Premiums are calculated based on information including age, gender, health status and lifestyle as well as the health histories of family members. The information that is gathered for actuarial purposes by an insurer varies depending on the company and the policy selected. Many companies assess family history, heart disease, cancer and cholesterol levels. There are anecdotal stories of Canadians being denied new policies if their hereditary cancer genetic testing is pending, or have been assessed by a genetics clinic as having a family history that is high risk for hereditary cancer. Many of those participating in genetic testing have not experienced problems with their insurance companies.

Several non-legislative solutions have been proposed in Canada. Insurance companies have been encouraged to create basic life insurance policies that do not require medical or family history information. It has been recommended by advisory committees that government impose a moratorium on the use of genetic information by insurance companies and create an independent body or commission to make recommendations.

Many questions are raised in the new era of the human genome and advances in our understanding of the genetic risk factors in common diseases. What will happen in the future should genetic predisposition testing become a commonplace tool for health assessment? At what point does a predisposition to a disease become a medical condition in itself? What about people found to have a genetic risk factor, who make proactive and risk reducing health decisions? Should genetic risk information be treated differently than other health information by insurance companies? When will Canada follow the lead of many European countries and the United States to draft policies regarding genetic discrimination? Unfortunately there are still more questions than answers.

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