A personís genetic information, if available to insurance companies and potential employers, can become a liability. If an individual has an 80% likelihood of having terminal Huntingtonís disease, should insurance companies and potential employers be allowed to use that information knowing that the individual could eventually cost them hundreds of thousands of dollars? Genetic discrimination could yield leveraged insurance premiums as well as unemployment.
Everyone has genetic anomalies, and genetic discrimination has the potential of preventing people from accessing their genetic data. Moreover, genetic discrimination can lead to misuse of data. In order to prevent such discrimination, the Genetic Information Nondiscrimination Act (GINA) was passed by Congress in 2008 with a vote of 420-3. GINA prohibits mandatory genetic testing and genetic discrimination in health insurance and employment decisions. However, life and disability insurance are not included in GINA.
GINA represents a landmark step in the field of genomics. Removing genetic discrimination is required in order to continue biomedical research. With the support from the public, genomics can grow faster, and we can develop a clearer understanding of more diseases, more physical traits, and our health. Also without discrimination, the public will be more inclined to get their personal genotypes, furthering research capabilities.
We recommend an increased conversation among the government, the private insurance companies, and genomics research hubs. It should be considered whether life and disability insurance should be included since they could also hinder genomics as a whole. Moreover, although GINA represents a step in the right direction, an even more comprehensive standard must exist in terms of who owns genetic data as well as how to safely secure that data.