Throwback Thursday, where, essentially I post old writing samples, essays and short stories that I dig up from my pile of hoarded papers and school assignments or from the depths of my computer. So everyone can see how my writing has changed/improved over the years.
(Co-authored with my friend Emilie C.)
Genetic tests are a fairly recent development in the medical, and sadly, despite the phenomenal advancements made each year on the science side of things, the legal side is lacking in keeping pace. For one thing, there are relatively few laws that protect genetic information, and according to the National Conference of State Legislatures, only one state of our 50 even considers genetic information to be personal property, this among other things need to be rectified, preferably before a crisis due to the abuse of genetic information.
Insurance companies are some of the most likely to abuse genetic information. Knowledge is power after all, and insurance companies have a vested interest not in patients, but in turning a profit. While the Genetic Information Nondiscrimination Act (GINA) passed in 2008 makes it illegal for health insurers and employers to discriminate based on DNA, according to the National Human Genome Research Institute, there is a loophole: the law does not apply to long-term care insurance, disability insurance, or life insurance. In fact, any type of insurance company aside from health care can demand genetic test results before offering coverage. The patients most in need of these insurances are those at risk for genetic diseases such as Huntington’s and Alzheimer’s, yet, these are the people who find it most difficult to get coverage.
Many people avoid getting genetic tests, even when they have a high risk of inheriting a disorder, and when early diagnoses may lead to better care, because they fear what the insurance companies will do. For instance, because of genetic predispositions, or a family history of a genetic disease that may lead to an early death, a life insurance company can deny coverage. A person’s health care insurance may not be (legally) affected by a company receiving test results, but a patient’s health is still adversely affected. In an ethical dilemma such as this one, a patient’s right health, safety, and peace of mind, are far more important than a company’s right to turn a profit.
The other big ethical issue with insurance companies receiving genetic test results is privacy. The fourth amendment protects us from having to share or give away our personal property, and what is more personal than our genetic code? Aside from an infringement of personal rights, it is an infringement on patient rights, such as patient confidentiality, which is one of the pillars of ethics in medicine. One of the most famous violation of patient confidentiality is the case of Henrietta Lacks, whose cells were used for scientific research without her knowledge, who never received compensation despite our cells being some of the most valuable in science today (Rabin Martin, 2013). As are abilities expand, as technology improves, we may face more and more cases like this, some with far worse consequences than that of Henrietta Lacks. It is better to start focusing on how to prevent it as much possible now, than to deal with the fallout later.
By allowing insurance companies to receive genetic results, you violate privacy as well as a long-standing focal point of ethics in medicine. For no reason other than that insurance companies want to us that information to make money. Some companies will claim that they will not use the information against you, but if they aren’t going to use it, then why not eliminate the risk and just deny them access to the information in the first place.
On the topic of using genetic test results against a patient, we are brought to discrimination. Knowledge is power, and those in power always seek to use it, and often, they abuse it. Insurance companies use genetic information to raise rates and deny coverage to individuals who need it. This is a basic definition of discrimination. Even worse, it is discrimination for something as invisible as your DNA. Something you cannot control anymore than you could control your skin color (which is also based in your genes, so I guess genetic discrimination is nothing new). But these days, we don’t allow business to refuse someone based on skin color, that sort of discrimination is illegal. So why is it okay to discriminate based on genes? Something that no one has any control over.
In short, insurance companies shouldn’t have the right to request or receive genetic test results, either from clients or from family members. That way lies violation of privacy and discrimination. We can’t stop the abuse of genetic information unless we control the access of it. We don’t have the proper laws in place to protect us; the legal system cannot keep up with biotechnological advancements. But we can start with this. Chose patient rights over a company’s monetary gain. Make the right choice.