Even though GINA (The Genetic Information Nondiscrimination Act) banned the use of employers and health insurance companies of getting hold of genetic information from employees and people with insurance. Genetic information is now affordable being only about $1000 per test compared to close to one million dollars a decade ago. However, the huge loop-hole in GINA is that it does not prevent life, disability, and long-term care insurance. For example, on April 7, 2014, nytimes.com posted an article (written by Kira Peikoff) about a case of 33 year old Brian S. who denies a genetic test because he has a 50% chance of receiving CADASIL (a genetic disorder that leads to stroke). Since he wants to apply for life and long-term insurance that GINA does not account for, he decided not to get genetically tested. Thus, many people like Brian S. feared the increased premiums or denied coverage from these insurance companies.
Dr. Klitzman, the director of Bioethics from Colombia shares his thoughts by stating that. "Someone may not know exactly why they were turned down may not go public because then they 'd be letting everyone know they have X mutation". He also did a study that revealed 4.5% of 220 internists at two medical centers have hidden and/or disguised genetic information.
Insurance companies state that withholding this genetic information would mean that the consumers are guilty of omission. In other words, insurance applicants who want genetic testing will be forced to give up their test results. Brian S. is in this tough position where he either has to choose life insurance or the possibility of having life-threatening CADASIL. The pressure that Brain S. feels would not only be felt by hundreds of millions of people in the USA, but billions around the world that want to apply for insurance.
This article was interesting to me because I have just signed up for life insurance not too long ago, and unknowingly to me, I did not even know a problem of this magnitude existed. The halt of genetic testing due to insurance companies' potential fear tactics creates more than just fear for those that know they have the possibility of lethal genetic disorders. It creates the fear that insurance companies will not know how to properly change rates due to the genes that someone was born with. People might just boycott insurance companies and in doing so will bring economic collapse. Only time will tell.
Original Article: http://www.nytimes.com/2014/04/08/science/fearing-punishment-for-bad-genes.html?_r=0
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