The benefits of clinically appropriate genetic testing are immensely high. Being aware that you may be genetically predisposed to a particular disease allows you and your physician to plan preventative care. The results of genetic testing can provide valuable information about your risk for certain inherited conditions and can be used to provide screening regimens and treatments that lengthen your life. However, this information can also be used by life insurance companies to justify charging higher premiums based on genomic discrimination.
In a society where medical advancements are being made so regularly, genetic testing and sequencing will only continue to become more routinely used in different aspects of medical care. From pediatrics to gerontology, the medical community will have more information at their disposal to be able to link distinct health risks based on one's unique genetic inheritance. Unfortunately this advancement heralds another opportunity for discrimination, or even persecution.
Thanks to The Genetic Information and Nondiscrimination Act, or GINA, which was passed in 2008, it is now illegal for health insurance companies and employers to discriminate based on genomic information. The passing of the law was a significant step, known as the "anti-Gattaca law," because of the rumor that politicians were urged to support the measure after the 1997 film about a genetically tiered future society was released.
Sadly, and unbeknownst to many insurance policy-holders, GINA provides patients with zero protection against discrimination when it comes to disability and life insurance. This is no mistake. In reality, it is a blaring emission that was put in GINA that allows life and disability insurance providers to legally discriminate against people with genetic conditions or risk factors that might predispose them to disease.
For this reason, many physicians feel obliged to ask patients to carefully consider what they might be getting themselves and their families into before requesting genome sequencing. Genetic testing or sequencing is not anonymous, and can be accessed by anyone be they insurance providers or other physicians treating you for different ailments. Why is that the case? Because what physicians discover can be considered a disqualifying factor for disability and life insurance - not just for the patient personally, but also for immediate family, and all future biological descendants.
Insurance underwriters charge premiums based on a clients level of risk, which is assessed based on medical history and lifestyle choices. In order to set fair premiums for all clients, insurers must have a complete picture of each client's health status so that they can accurately assess the risk involved with each insurance policy.
Naturally life insurance agents will write policies with higher premiums for clients who have bad health habits, such as smoking, or hazardous occupations, such as a NASCAR driver. These are both choices that an individual makes about his or her lifestyle that put them at higher risk of fatal health outcomes.
However, you can decide not to smoke or to choose a safer career - you can't decide to change your genome.