In 2008, The Genetic Information Non-Discrimination Act (GINA) was passed by the United States Senate 95-0. The bill was then sent back to the House of Representatives and passed 414-1, with Rep. Ron Paul being the lone dissenter. On May 21, 2008, President George W. Bush signed the bill into law.
The signing of GINA prohibited health insurers and employers from forcing people to submit to genetic testing or to use the tests to discriminate and influence hiring decisions. Additionally, Insurers could not use genetic tests to deny coverage or charge higher premiums. In 2008, when the bill was passed, Sen. Ted Kennedy called GINA the "first major civil rights bill of the new century."
Presently, a bill introduced by Rep. Virginia Foxx (R-NC) and sponsored by the GOP, referred to as the “Preserving Employee Wellness Programs Act” or HR 1313, is working its way through the beurocratic legal process. If passed, HR1313 will remove many of those protections that GINA provides to the American people. Specifically, the bill will allow employers to impose genetic testing on employees, provided the testing is for a “workplace wellness program.”
So why do companies want to test their employees genetically and what exactly does all of this mean? Well, let’s go back to 1990 when an international scientific research project was funded by the United States Department of Energy, entitled The Human Genome Project. The Human Genome Project’s primary goal is to determine the sequence of chemical pairs, which make up human DNA. The project’s aim was to map and identify the estimated 23,000 genes in the human genome. The primary goal of the project was to expand on the field of molecular medicine to better understand human evolution and genetic diseases. Researchers hoped that by understanding how genes express themselves, they could better understand how diseases are caused, and ultimately facilitate in curing or preventing disease.
Now, the DNA sequences mapped by the Human Genome Project stored are in open databases, which provide the information to anyone through the Internet. This storage of information is difficult to decipher without specific computer programs. However, this doesn’t limit the fact that it’s existence has brought about numerous ethical, social, and legal issues. In fact, the Department of Energy, the parent organization of the Human Genome Project, actually devoted approximately 5% of their annual budget towards specifically studying the ethical, legal, and social issues. Through these studies, a host of legislation has arisen to attempt to answer some of the most significant legal and moral debates surround the project. One of the biggest issues is who should have access to personal genetic information, and how will it be used.
There are some obvious, ominous aspects to having a person’s genetic coding at your disposal. The 2008 GINA Act was passed to prevent some of the more controversial uses of genetic testing, such as testing by employers, or health care providers. In essence, with genetic knowledge of an individual, an organization could fail to hire or could terminate an individual’s employment solely based on a person’s genetic predisposition.
Equally, as concerning involves the implication that health insurance companies could deny, or implement stricter policies based solely on an individual’s genetic coding. From a social standpoint, specifically, with mental health concerns, there is a stark issue presented by genetic mapping for psychological abnormalities. Psychologist and neurologist have repeatedly proven that a person’s mental health is dependent on the combination of environment and genetic predisposition. As demonstrated by the Lewin Equation, behavior is a function of an individual and his environment. Just because a person has the genetic predisposition towards a psychological abnormality, it does not guarantee it will formulate when given the absence of an environmental catalyst.
As with most things in life, a financial gain can be a significant driving force. As a result of the work of the Human Genome Project, numerous private companies began to offer genetic testing to the general public. The aim of these test is to provide people with methods of determining a person’s predisposition towards a variety of illnesses. The upside of this type of information is that individuals predisposed to certain diseases may be able to take positive strides to prevent disease or better yet proactive disease management. The downside is, how much does someone want to know about their genetic mapping, or how might the knowledge impact your life. For me, I consider ignorance is bliss. In essence, consideration should be placed on the fact that if your genetic coding predisposes you to disorders in which there is little prevention that can be done, the information can be highly distressing, and challenging.
Most importantly, even in biological disorders, environmental factors continue to play a significant role in disease adaptation. For example, you may be predisposed to heart disease, but what would you do to with this information that would benefit you from contracting heart disease? The best recommendations would be diet, exercise, and not to engage in harmful actions such as drug use or smoking. Frankly, a person should not need their genome sequence to realize already that these types of lifestyle choices are already beneficial to a person’s overall health. Lastly, and equally as important is the fact that the science of genetic testing and research is not a static state. New information continues to be discovered exponentially. It is still too early to say that a genetic report you would receive currently, would ultimately be the complete map of your future health.
If passed, H.R. 1313 could open Pandora’s Box concerning individual’s losing one of the last predominately secure freedoms they have. That is why the issue of genetic testing should be considered an important non-partisan issue, and not a particular political party’s measure of loyalty. Allowing, employers to impose genetic testing or to penalize employees who refuse to participate, is flat out ethically wrong. Bear in mind; genetic testing does not just reveal information on the one who is being tested. It also provides genetic information on one’s siblings and children. Essentially, an employee can understand the privacy risk and agree to genetic testing. However, that employee’s children or siblings will still have their genetic information given up a, without their consent.
Once an individual’s genetic coding is provided, there is no “getting it back.” That information will go into to a network and what is ultimately done with it, from now until the end of time, is anyone’s guess. Don’t be fooled by the companies and advocates for testing, into thinking that your information is secure. Lest we forget, it was only four years ago that Edward Snowden handed off thousands of classified documents from the NSA, and as recent as this year that the CIA hand the keys to their entire hacking kingdom handed off to Wikileaks. If the CIA and NSA cannot keep their information secure, do you really think that a health provider or private organization is going to be able to guarantee one’s privacy?