Genetics, Cancer and The Law


Scientific advances have brought about new medical options for individuals in the cancer realm, including the option to take a genetic test for certain types of hereditary cancer, such as breast and ovarian cancer. These medical advances can be beneficial tools to help individuals understand their options for preventative treatment if they are shown to have a higher predisposition for developing cancer at some point in the future. However, the decision to take a genetic test can raise many questions, including legal concerns.

Imagine an individual named Jane. Jane has a family history of breast and ovarian cancer on her father’s side of the family, but she is worried that her insurance company might raise her premiums or that her employer may fire her if she takes a genetic test and her test results are positive.

The good news for Jane is that there are some laws that protect against genetic discrimination. Congress passed the Genetic Information Nondiscrimination Act (GINA) in 2008. This law prevents certain health insurance companies and employers from discriminating against an individual based on his or her genetics. GINA defines genetic information broadly to include genetic test results, family medical history, and use of genetic services. Therefore, before she takes the genetic test, Jane is protected by GINA because neither her health insurance company nor her employer could discriminate against her based on her family history. If she decides to speak to a genetic counselor or take the test, those groups cannot use that information to discriminate against her either.

One of the unique parts of GINA is that it not only bans health insurance companies and employers from discriminating based on genetic information, it also prohibits these players from getting an individual’s genetic information to begin with. There are some
limited exceptions to this rule, but, in general, Jane’s employer and health insurance company cannot even ask her about her genetic information.

While GINA provides important protections for individuals like Jane, there remain some gaps in the system. For example, although GINA governs health insurance, it does not regulate other types of insurance, such as life, long-term care, or disability
insurance. These insurance policies are regulated at the state level and protections vary widely between the states. Therefore, Jane should consider how the genetic test may affect her ability to get these types of insurance policies before taking a genetic test. Additionally, while GINA does protect against discrimination based on genetic information, it does not require a health insurance company to pay for any preventative services. Therefore, Jane should speak to her doctor to see what preventative options may be best for her and check to see if her insurance policy covers these services.

Because GINA is so new, the way that the regulations will work in practice is still being played out. Additionally, many portions of genetic laws are regulated at the state level and there are continuous efforts to pass additional protections in various states around the country. For questions about GINA and state protections, visit, or call the Cancer Legal Resource Center (CLRC) at (866) 843-2572.


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