GINA (important law for us)
GINA: Genetic Information Nondiscrimination Act
There is a new federal law, the Genetic Information Nondiscrimination Act (GINA), that likely will benefit women who have tested positive for genetic predisposition to breast and ovarian cancer (BRCA1 and BRCA2 genes). As everyone knows, there are increasing numbers of genes--impacting a wide range of illnesses--that can be identified, and there has been a lot of worry about the possible impact of positive tests.
Living Beyond Breast Cancer has a good summary of this news on their website. This new law prohibits employers from using genetic information in hiring, firing, promotion, or other job-related decisions and, perhaps even more importantly, prohibits insurance companies from raising premiums or denying coverage based on individual genetic test results of family history. Although there has not been a court case to test these worries, many people have been reluctant to undergo genetic testing for fear of negative implications for themselves or for their families. Clearly, any of us who carry a cancer diagnosis already have "shared the information" with our insurance companies as they have paid the treatment bills. But, we have, perhaps, been concerned about implications for our daughters or sisters if information about a positive gene test were to be shared with their insurers.
This law was signed by President Bush in May of last year (2008). The health insurance part of GINA becomes effective in May 2009, and the employment part in November 2009.
There are many other issues surrounding a decision to undergo genetic testing. Before having this blood test, women are strongly encouraged to consider what a positive result would mean. Would you be willing to consider the recommended measures of bilateral mastectomies and removal of your ovaries? What would the implications be for your children who would then have a 50% chance of also being gene carriers? Would you be willing to share the information with other relatives who might also be at risk? It is extremely important to only have genetic testing at a medical center that includes/requires genetic counseling as part of the process. A counselor would then discuss the medical, familial, and psychological aspects of a positive test result and help make a decision whether testing is the right choice at any particular moment. It is never recommended that testing be done on young women (the suggested age varies, but, generally, mid-20s would be considered the earliest reasonable age to be tested).
How common is genetically based breast cancer? The best estimate is that heredity is a factor in 5 to 10 percent of all breast cancers. It is important to remember that positive gene mutation does not necessarily that a woman will develop breast or ovarian cancer. It does mean that, by age 70, the incidence of cancer in these women is 55 to 85 percent, depending on the strength of the family history.
There are clear guidelines about who should consider breast/ovarian gene mutation testing. If you know that you have a strong family history (first degree relatives, especially if they were diagnosed prior to menopause) or if you have few female relatives, were diagnosed before 40 yourself, and, especially, come from an Ashkenazi Jewish heritage, it is worth discussing this question with your doctor.
The passage of the GINA law effectively eliminates one real barrier to testing.