The New York Times online edition recently published an article by Kira Peikoff, a student at Columbia University in the Master’s of Bioethics program. This article, entitled “Fearing Punishment for Bad Genes” published on April 7, 2014, dealt with the connection of insurance companies using the results of genetic testing to determine whether someone is eligible for life, disability, and long term care insurance. It foretells of a world wherein people who voluntarily undergo genetic testing may have that information used against them by insurance companies. The article discusses the potential threat of the Genetic Information Nondiscrimination Act (GINA) which does not apply to life, disability, or long term care insurance policies. DNA, which determines everything from eye and hair color to a propensity for breast cancer can now be mapped and used in a modern sense for a potentially new type of discrimination. The advent of maintaining electronic medical records presents a new ethical quandary for doctors as they scramble for ways to protect their patients who are undergoing genetic testing.
Genetic testing has become more accessible and affordable to the American public. What used to be a $1 million procedure now costs a mere $1000. With such a decrease in price, it is no wonder that more people are electing to check out their genomes. However, because of the way GINA was written, some people are electing to opt out of genetic testing for fear of not being able to obtain insurance. Some people, such as the ones mentioned in the article, may need to know their likelihood for carrying a gene for a life-threatening condition. One person in particular, Brian S., wanted to know if he carried the genetic mutation for a hereditary disease because he and his wife wanted to know whether they should plan to have children. Since he wants to apply for life insurance, he elected to not be tested for fear the results would be held against him by an insurance company. This also means that he and his wife will not have biological children for fear of maybe passing on this genetic mutation. This example shows the potential for an entire new realm of discrimination to be ushered in to the modern genetic era. Only three states prohibit this discrimination by insurance companies-California, Oregon and Vermont. Doctors are trying to come up with an ethical manner to handle, or hide, the results of their patients’ genetic tests in order to protect them from the insurance companies.
Since this topic falls on the cusp of a new era in genetic research, it foreshadows what may be a new frontier in reconciling science with the big business of insurance companies; therefore, it should be of interest to all scientists as they work to resolve the issues of protecting patients within the legal realm of HIPPA. In BI 101, we have studied the nuts and bolts of genomes, but we have not fully considered the ethical ramifications of mapping those genomes. This article sheds light on how the information gleaned from genome testing may negatively impact someone as he tries to buy insurance in order to provide for his family. Type I diabetes runs in my family. The negative aspects of this dread disease include heart disease, kidney deficits, neuropathy, loss of vision, and a host of other problems. I would like to know if I carry this gene, but after reading this article, I doubt that I would pay the $1,000 for genome testing only to have the results, should they be positive, used against me when I try to purchase life insurance. This article has left me with a plethora of questions. I wonder whether this dilemma is just the tip of the iceberg. Will there come a day, in the not too distant future, where genetic testing is mandated to purchase life insurance? Taking this one step further I would ask, what other ethical dilemmas and debates will arise as the result of the prevalence and affordability of genetic testing?