Clinical Research and Discrimination

¶ … Letter to Support the Genetic Information Nondiscrimination Act of 2008 (GINA) The Genetic Information Nondiscrimination Act of 2008 (GINA) is an Act of U.S. Congress that makes it illegal for employers and health insurance companies to use genetic information against an individual. For instance, if a person has a genetic predisposition to a particular disease that runs in his or her family tree, an insurer is not allowed to use that information as a reason for denying coverage to that person.

Likewise, a company may not discriminate against individuals based on their genetic information. GINA also has implications beyond either of these two instances. This letter will discuss why it is important that GINA be supported by Americans and their representatives in Congress. Body The first reason GINA should be supported is that it does help to protect individuals from discrimination by health insurance providers.

A genetic predisposition to a particular disease is not something that a person can help any more than a person can change the color of his or her skin. If persons are protected from racial discrimination in America, they should also be protected from genetic discrimination.

In the 21st century, it is possible to examine genes and genetic make-up more closely than ever before -- but this does not make it right for insurance companies to rule out offering coverage to individuals whose genes do not fall into the "perfect" category. Moreover, there is still a great deal that modern science does not know about genes and how they work -- so discriminating against a person based solely on genetic information is like discriminating against someone based on hearsay.

More work needs to be done in fully understanding how genetics works, before any action regarding genetic information is taken by the health insurance industry. Another reason support should be given GINA is that it protects workers from discrimination at work. One's job and/or career should not be threatened by a factor over which one has no control.

Taking personal responsibility for one's actions and accepting accountability is one thing -- but being punished for something that is entirely out of one's hands is unethical in this day and age. For employers to be able to access one's genetic information and make a decision about whether to retain you or let you go, hire you or fire you, is a bridge that should not be crossed: it is no different from making a decision about a worker based on race, ethnicity, gender or sexuality.

Finally, GINA has important ramifications for those who participate in genetic research. So as to ensure that GINA guidelines are followed by the Department of Health and Human Services, participants in clinical research are given informed consent forms, which are to "include information on any risks associated with participation in the research project and a statement describing how the confidentiality of records will be maintained" (National Human Genome Research Institute, 2015). This helps participants in clinical research to ensure their own privacy.