Genetic Testing, Ethics and Democratic Freedoms
In 2003, Burlington Northern secretly used genetic testing to establish the cause of a high incidence of carpal tunnel syndrome in its employees. At least that was the claim of the company in testimony elicited during the lawsuit brought by EEOC. The EEOC found that company doctors were instructed to find genetic evidence of other disorders as well, including alcoholism and diabetes. The case never went to trial, because Burlington Northern settled with EEOC (National Genome Research Institute 2007).
There are several distressing aspects of this case. Burlington Northern acted in a manner consistent with the worst traditions of corporate arrogance. The company withheld from employees that tissue samples would be subjected to genetic screening. One employee who refused to submit to a blood draw for this project was threatened with termination.
Also troubling was that the EEOC lawsuit was based on violations of the Americans With Disabilities Act and alleged that termination on the basis of test results would be based on disability and therefore illegal. In other words, as far as present law is concerned there is nothing illegal about secretly subjecting employees to genetic testing, as long as they are not fired. There are no Federal protections against secret testing, creating databases of employee genetic profiles or sharing this information with other organizations, such as law enforcement agencies or insurance companies (National Genome Research Institute 2007).
Presently there are no comprehensive federal laws governing genetic screening in employment. Laws at the state level vary tremendously form state to state, with no unifying philosophy or goal (Greely 2005). Part of the problem stems form the gutting of the Fourth Amendment in the 1980’s in an effort to discourage Americans from using various legal and illegal drugs. During that time, the Supreme Court held that the state has a compelling interest to monitor tissues of citizens in order to detect drug use and insure public safety. As a result, the Fourth Amendment, designed by the Founders to limit government intrusion into the lives of American citizens, was severely limited.
"The Fourth Amendment has been virtually repealed by court decisions, most of which involve drug searches," says Steven Duke, a professor of law at Yale University (McCullah 2000).
The problem is that the logic supporting drug testing by the government or employers applies just as well to genetic testing. Tests for both use the same procedures and tissues. Presently the phenotypes of interest are those that are related to very rare but serious diseases, such as Cystic Fibrosis or Fragile X Syndrome.
However, we are on the cusp of discovering the influence that the genome has on behaviors. We know that genes influence the need for risk taking, for example (Zimmerman & Kuhlman 2000). Already companies are presenting executive job offers contingent on traditional psychological testing, such as the WAIS or MMPI, so it is not a stretch to assume that businesses would be interested in the behavioral phenotypes of perspective employees in the near future (Randal undated).
Is any of this ethical? It is hard to say because ethics and morality is fluid. The United States entered World War 1 largely because of the moral outrage of the sinking by a submarine of the passenger liner Lusitania. The same outrage was directed at the Japanese in the late 1930’s when they attacked civilian targets in China with airplanes. However, the first general order on December 8, 1941 after the destruction of the American fleet at Pearl Harbor called for unrestricted air and submarine warfare on any ship or aircraft flying Japanese or German flags.
In less than 36 months, the United States would be leveling entire European and Japanese cities with conventional weapons, and twice launched nuclear attacks on Japanese cities. The cites of Dresden, Nagasaki, and Hiroshima were all relatively untouched by air bombardment because they had very little military significance, being cultural centers where large numbers of POWs, old people, children and other noncombatants were located for their safety (Spector 1984). Nevertheless, all three cities were incinerated.
One of the basic principles of modern law is that our thoughts are our own. Our First Amendment prevents the government from limiting speech and communication, but it is based on the principal of freedom of thought. However, what happens when we find behavioral phenotypes? What if the Human Genome Project identifies genes related to pedophilia? Historically, prisoners at the bottom of the social scale are the first to be compelled to conform to draconian laws. Sex offenders were the first have DNA identification samples taken from their bodies, and since then the procedure has spread to all prisoners, the military, and recently attempts to include all those simply arrested have been made.
If we can find a gene that, (politicians and the public), believes to code for behavioral phenotypes like pedophilia or violence, how ethical will it be to screen public school teachers? What about university professors? What about the rest of us? Once screened for these genes, (if they exist), will we be compelled to undergo gene therapy to modify our genome?
The price of principle-based public policy is tolerance for misuse of those principles. For example, in the United States the Second Amendment prevents the government from outlawing weapons because they are tools needed to exercise the principle of political self-determination by seizing power from government that turns despotic. The price of that freedom is spouses that get drunk and shoot one another, but as a society invested in the principles of democracy and republicanism, we accept that as the price of political power vested in the governed.
We also enjoy First Amendment guarantees of freedom of speech, but the price of that freedom is exposure to material that we find disturbing and offensive. Nazi websites and racist “hate speech” on the internet is the price we pay to allow a vibrant marketplace of ideas to identity specious ideas and endorse enduring ideas.
From the perspective of democratic ideals, we may in a position of choosing between our political freedoms and public safety. The repressive totalitarian governments of the mid-20th century, such as China and, Romania experienced very low crime rates because because of powerful and repressive governments. Even today in countries like Vietnam and Cambodia individual freedoms and the right of self-determination have been traded for social stability.
As the world gets smaller and more centralized though intra governmental agencies such as the European Union NAFTA and GATT we may see more need for centralized control over regional or even global social policy. Will we see the day when people with the DR4R gene, suspected of coding for risk taking will be allowed only in military and police personnel?
Ethics? I do not know. We have to wait to find out what ethics we develop, I guess. However, I do not think I will be watching Gattica again anytime soon.
Randall, S. (undated). An Overview of personality testing in the workforce. Workforce Management, Accessed at: http://www.workforce.com/archive/article/22/07/28.php
Greely H., (2005). Banning genetic discrimination. N Engl J Med. 2005 Sep 1;353(9):865-7.
McCullah, D., (December 12, 2000). Privacy a Victim of the Drug War. Wired. Accesed at: http://www.wired.com/politics/law/news/2000/12/40532
National Genome Research Institute. (2007), Cases of Genetic Discrimination, Accessed at: http://www.genome.gov/12513976
Spector, R. (1984). Eagle against the sun. New York, NY: MacMillian.
Zuckerman, M., & Kuhlman, D. M. (2000). Personality and risk-taking: Common biosocial factors. Journal Of Personality, 68(6), 999-1029.