We would like to clarify an apparent misconception that the Hereditary Cancer Program is no longer operational. We are still accepting referrals for families at high risk of breast and ovarian cancer, hereditary colon cancer, and other cancer syndromes including medullary thyroid cancer, retinoblastoma, Li Fraumeni, and Von Hippel Lindau.
Since 1997 the BC Cancer Agency has offered a comprehensive program, which includes education, genetic counseling, laboratory testing, clinical follow-up, and outcome evaluation. To date more than 2000 families have been seen in the program, the majority at high risk for breast and ovarian cancer.
Inherited mutations in the BRCA1 or BRCA2 genes greatly increase one’s lifetime risk of developing breast and ovarian cancer. In April 2001, Myriad Genetics successfully obtained Canadian patents for BRCA1 and BRCA2. In July 2001, they served legal notice to the Ministry of Health Services that the BC Cancer Agency was infringing on their patent rights. The Ministry of Health Services instructed the BC Cancer Agency to discontinue laboratory testing for BRCA1 and BRCA2.
All components of our program remain operational except for laboratory testing for BRCA1 And BRCA2. Families should continue to be referred for genetic counseling so that they can understand the likelihood of whether a mutation exists in the family and make an informed decision regarding whether to pursue laboratory testing. Testing is helpful in stratifying an individual’s lifetime risk of developing cancer. For extremely high-risk women, we discuss the pros and cons of screening and early detection versus prophylactic surgery, regardless of whether they choose testing. Not everyone pursues testing as there are ethical issues and a potential for social, insurance, and employment discrimination. If laboratory testing is desired then the individual has to pay Myriad Genetics a fee of $3850. Testing is important but it is only one component of the program.
Families in Alberta and Ontario are still able to have testing done in those provinces. France has instituted a legal challenge on the validity of the patent. It will be a few years before we know the outcome of the challenge. There is a huge ethical debate on the ability to patent genes. Is the ability to sequence a gene a discovery or an invention? If genes are patented there will be a significant cost impact on health care in the future.
—Charmaine Kim-Sing, MD
—Doug Horsman, MD
Hereditary Cancer Program
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