The Science of Bias

“Any discrimination, like sharp turns in a road, becomes critical because of the tremendous speed at which we are traveling into the high-tech world of a service economy,” said Supreme Court Justice Clarence Thomas. Inequality among humans is a dangerous aspect of society. For centuries it has been ­fueled by arrogance and hatred. However, a new and treacherous implement is rising on the horizon. Discrimination is no longer ­fueled just by emotions, but also the definitive and powerful tools of ­science. The lack of ­restraints gives leeway for genetic bias among health-care companies and employers, which is both a current and future moral challenge.

Genetic discrimination is deeply rooted in our nation's history. When DNA was first discovered, scientists quickly realized that it allowed insight into diseases, and might one day be controlled. The world of genetics was destined for failure when, in 1995, “the Human Genome Project bore its first fruits. The gene for [many diseases] had recently been identified” (Hastings Center Report, 2008). The discovery of the genomic structure ­allowed society to take a closer look at things like heredity and disability ­disposition. First it was genetic screening, then came testing, and eventually, profiling. Soon the dangerous quest for knowledge had created a new foundation for discrimination.

The world of science evolved more quickly than the world of politics. With the discovery of inheritable diseases and their link to the human genome, health insurance companies caught on quickly in the late 1990s. They are businesses designed to make a profit. Once they realized the precision of genetic screening, they began to pick and choose “less risky” candidates. This was clearly an instance of genetic discrimination.

Fundamentally, the processes that led to genetic inequality have both beneficial and detrimental results. Genetic screening is a powerful technique that can aid the fight against disease and accurately predict heredity. However, it must be used with extreme caution. New testing, combined with today's technologies, make it easy to discern a person's ­inheritable structure. With this new and vast power, scientists need to ­recognize the enormous ­responsibility they now have.

But it is not only scientists; the fruits of human genetics are trickling down to everyday people, and with them come an array of new challenges. Expectant parents can now peek into the life of their unborn child, since it is possible to ascertain a fetus's genetic makeup. As a consequence, some may choose to abort a fetus that may have a predisposition for disabilities or diseases.

Furthermore, as heredity is better understood, insurance companies also become better informed. There are clear benefits to unlocking secrets with genetics, but if those secrets end up with employers and insurance companies, there could be major problems.

Genetic favoritism is a growing problem that could eventually reshape the world's economic stature. The catastrophic possibilities are endless. The more widespread genetics becomes, the easier it is for insurance companies to access this information and plan ­accordingly. For example, New Hampshire mother Jamie Stephenson learned that her two-year-old son had Fragile X syndrome, and her insurance was quickly canceled. Insurance companies make decisions based upon how vulnerable potential candidates may be. The Stephenson case has little to do with genetics, but everything to do with discrimination. The bottom line is companies want to make a profit, and insuring sick people is not how they will do it.

After an inheritable disease is discovered, a person will have troubles receiving benefits, insurance, or even a job. Sheryl Gay Stolberg of the New York Times relates a story about eight-year-old David Manikian, another child with the Fragile X gene: “The family finally got health insurance, but only after four companies turned them down. [They] were held hostage by heredity.” Economically, people with “bad” genes are destitute. The mutation may have little impact on their daily life, but the discrimination that results can be devastating.

Individuals are now backed into a corner. The only way is to keep one's genetic makeup private is to avoid the test. The people in today's business world are fighting a losing battle. The sickening factor is that insurance companies actually believe they are morally and economically correct. After all, their investors believe they are making the smart decision by cutting out “risky” specimens. Dean Rosen, of the Health Insurance Association of America, says, “If you allow people to wait until they're sick or likely to get a disease, and you can't reflect that in your pricing, we don't think that's fair.” In short, the individual workers stand no chance against the multibillion-dollar companies that are driven by low costs and high profits. Genetic discrimination is not only fueled by science, but also by the greed of society.

The federal government is far behind the world of science. Sociologically, genetic discrimination is running rampant. The Genetic Information Nondiscrimination Act, or GINA, was introduced shortly after the Human Genome Project and created to destroy genetic bias. But GINA is failing miserably ­because multimillion-dollar businesses and health-care companies are in control, even over Congress.

USA Today's Stephanie ­Armour writes that the main controversy, ­genetic discrimination, “has been ­debated in Congress … but insurers are on the defense. Overzealous privacy laws could allow those with a known genetic susceptibility… to drive up costs.” The fact remains that no matter what is done, costs will rise. Commerce has determined that cheap insurance is more important than abolishing genetic discrimination. The major problem with GINA is that the law does not protect the individual. Banning discrimination is a roundabout way to deal with the problem. But who wants to deal with the root of the problem?

After the issue is passed around, it is left in the hands of the insurance companies. Article 20 of the Universal Declaration on the Human Genome and Human Rights released by ­UNESCO emphasizes that “states should take appropriate steps to ­provide the framework for [genetic] research.” But according to USA Today's Armour, the states are not doing their job: “Thirty-one states have enacted laws … but the patchwork of legislation varies. Some laws ban only for one genetic trait.” If legislature does not deal with the problem at hand, genetic discrimination will have no boundaries.

Without restraints, genetic science will continue to evolve faster than the law. The first effects of genomic studies had redemptive motives. Initially, genetic breakthroughs prolonged life. Unfortunately, the dangerous quest for knowledge has created a world of ­genetic discrimination. Presently, ­genetic bias has just begun its course, and for each small step made in legislation, science answers back with a powerful leap in discovery. Hopefully, it could be only years, not decades, ­before genetic discrimination is outlawed. However, bias based on race is only now receding. It is quite possible that the movement against genetic discrimination will take as long as the movement for racial equality.

Without serious ­restraints on human ­genetic bias, devastation is almost certain. The basis for genetic discrimination runs back to the first human genomic projects and gene screenings. Although testing is fundamentally a worthwhile process that can save lives, society now has discrimination down to an exact science. Individuals are inexorably fated for economic failure unless medical records are withheld from insurance companies and employers. The only chance to stop genetic favoritism lies in the wobbly hands of the legislature – and it will take more than a few laws to stop the genetic monster and the scientists who ruthlessly run it.