Genetic discrimination is defined by the Centers for Disease Control and Prevention as “prejudice against those who have or are likely to develop an inherited disorder.” With advances in science, it is possible to determine whether specific gene mutations exist and to discover the likelihood of an individual developing a disorder based on the existence of these mutations. These developments have created situations that concern the public: their privacy and possible employment livelihood. One of the major issues noted by the National Human Genome Research Institute (NHGRI) is the possibility that individuals who have taken this testing, and received positive results, will be turned down for health insurance or employment. This possibility will most probably be at issue depending on the political party and dominant political persuasion in power at both the national and state levels, as well as in the Supreme Court.

Many people with family histories or other factors that determine their susceptibility to certain diseases or disorders will have to make a decision about whether to be tested for the existence of certain genetic sequences or mutations. A major factor in this decision will be how this information will be used and who will be able to access the results. Patients may choose to refuse testing that could save their lives or improve their quality of life because they fear future discrimination. Employers with group insurance plans may want to know whether any of their employees are predisposed to a specific disorder. Insurance providers would also like to have the results of genetic testing to assist in underwriting policies. Both of these scenarios are likely to lead to discrimination against or exclusion of certain individuals for either employment or insurance coverage. 

Human Genome Project

One of the major catalysts of the advancement of genetic testing and the interpretability of genetic information was the Human Genome Project. It began in 1990 as a joint effort between the National Institutes of Health and the United States Department of Energy. The project had six goals: (1) to identify all of the approximately 20,000 to 25,000 genes in human DNA; (2) to determine the sequence of the 3 billion chemical base pairs that make up human DNA; (3) to store this information in databases; (4) to improve tools for data analysis; (5) to transfer related technologies to the private sector; and (6) to address the ethical, legal, and social issues (ELSI) that may arise from the project. Accomplishments leading to the project’s completion in 2003 have contributed to major advances in scientific research and health care, primarily in the areas of medicine and genetic testing. Understanding the genes and sequences associated with common diseases has future implications for the entire human population and will help to detect and possibly remedy disorders with more precise and targeted treatments.

Business Response

Even before the entire human genome had been sequenced and published, and the implications of the discovery had been reviewed to establish guidelines and boundaries, biotechnology companies and others conducting scientific research had begun to develop uses for this new way of looking at human conditions and diseases. One question from this new branch of medical technology is: Who, if anyone, should own gene sequences, and who has the rights to one’s genetic information? The issue of patenting gene sequences began long before the map of the human genome was completed and prior to consequences of granting these patents were able to be seriously examined. Companies had already begun to submit applications and receive approval for gene sequences that had some still unknown future use and potential profitability. According to Modern Drug Discovery contributor, Charles W. Schmidt, “Those who seek patents usually want to protect research investments in one of two markets: gene- and proteinbased drug development or diagnostic testing that searches for gene sequences linked to a given illness” (Schmidt, 2001). Even without strong federal regulations to guide the use and ownership of test data and eliminate the reluctance of people to agree to testing, companies developing genetic tests believed that patenting is necessary to protect an industry that is someday likely to generate millions in profits. Those in opposition to this view have trouble allowing ownership of something that is so personal. The major caveat to granting these patents is that it limits and slows the competition in the industry to find uses for and make advances in an already-patented gene sequence. However, if there is no guarantee of exclusive ownership with the outcome of research, companies may choose not to move forward in research. The main issue of a significant business response to scientific advancements in genetic testing and gene sequencing is ensuring that laws and regulations keep up with technology and medical advances to prevent major abuse, ownership, and privacy issues.

The two cases that follow illustrate the evolution between 2001 and 2013 of enforcement with regard to the genetic nondiscrimination Title II law.

The Case of Burlington Northern Santa Fe Railway

In February 2001, the Equal Employment Opportunity Commission (EEOC) filed a suit against the Burlington Northern Santa Fe Railway Company for secretly testing some of its employees. The genetic tests conducted had been developed by Athena Diagnostics in Worcester, Massachusetts, to detect a rare neuromuscular disorder, but Burlington Northern had been using them to validate and predict claims of carpal tunnel syndrome made by railroad workers. This incident, and others like it across the United States and Europe over the following years, raised concerns about the access and rights that employers have to their employees’ medical and genetic information. In this case, if Burlington Northern had discovered that employees with carpal tunnel syndrome had a genetic predisposition to the injury, the company could have claimed that the ailment was not job related and therefore denied payment of any medical bills. The EEOC filed its suit referencing the Americans with Disabilities Act, which states that “it is unlawful to conduct genetic testing with the intent to discriminate in the workplace.” Cases like this alerted lawmakers and activists to the growing concerns of discrimination in the workplace based on genetic information, and on closer examination of the issue, revealed significant inconsistencies and gaps in the laws currently protecting the rights of employees....

Questions for Discussion

1. What is genetic discrimination, and why is it an issue?

2. Who would benefit and who would be at risk if genetic testing and the results of such tests were legal and could be required of employees? Explain.

3. Explain the ethical principle(s) that could be used to (a) argue against genetic testing of employees and (b) argue for genetic testing.

4. Explain your position on the issue of genetic testing by employers.

5. How does the outcome of Rhonda Jones’s case affect employers? Is there now a fair balance between the Title II GINA law and employers? Explain.