To what extent does the law enforce rights in addressing genetic profiling?To what extent does the law enforce rights in addressing genetic profiling?
Genetic profiling is something that can be used for many purposes. Of these, some are beneficial to society while a large number of applications can be considered a severe breach of privacy.
Genetic profiling can be used by employers to discriminate against their employees; by insurance companies to discriminate against people who want to buy an insurance policy and charge higher premiums or deny insurance coverage to those who are considered predisposed to falling ill based on their genetic profile. It can also be used by the law enforcement agencies to harass individuals who may be considered more likely to commit crimes.
The problems that can arise from the misuse of genetic profiling have not been adequately addressed by American law. Presently there is only one law known as the Genetic Information Nondiscrimination Act, or GINA which came into effect in 2008 that makes it a crime for employers and insurance companies to discriminate against people based on their genetic profile.
Information contained in a person's genes should be accessible to others only for purposes that can benefit them. With the rapid advancement in technology increasing the applications that information about a person obtained by looking at their DNA can be used for, it is essential for an adequate legal framework to be created to regulate this.
In the United States, at least, it is illegal to use information from genetic testing as a reason for discriminating against a person. This has been the case since November of 2009, which is when the Genetic Information Nondiscrimination Act of 2008 took effect.
This law is meant to make it easier for people to take advantage of modern breakthroughs in medicine brought about by genetic testing. The law says that no aspect of employment may be affected by the results of genetic testing. As the link below tells us, (italics in the original)
An employer may never use genetic information to make an employment decision because genetic information is not relevant to an individual's current ability to work.
It is also illegal to harass someone because of their genetic information and it is illegal in most cases to try to obtain their genetic information.
While the law on this issue is quite clear, the problem is that, with the ease and amount of data mining and data sharing that goes on in such a "wired" society, the law as it stands is almost impossible to enforce. Insurance companies have the most to gain from your genetic profile, as they'll have a better idea if you are a higher cancer risk, have a family history of diabetes, and so on, which means their actuarial tables can be adjusted to reflect that. That's a pretty scary scenario by itself, as it means some of the people who need health coverage the most won't get it.
As always, enforcing a law lags behind legislation. The case of international copyright infringement is a good case in point. Pirating took years to debate and reach accord on although laws were in place to prevent copyright infringement. Now every DVD and other media bear messages warning about Interpol and reminding about having no intent to profit. It seems genetic profiling laws fall into the cauldron of trouble that pirating recently escaped: in other words, enforcement of laws regarding genetic profiling may be enforced less successfully than could be wished.
If you want a future dystopian vision of a world in which genetic profiling has gone mad, watch Gattaca, starring Ethan Hawke and Uma Thurman. This presents us with a terrifying world where your entire life is determined on your genes. What job you can have and who you can marry is utterly influenced by your genetic code. This nightmarish vision of a possible future should make us all realise the dangers of discriminating against somebody based on their genes.