We live in a diverse world and it is this diversity that makes this world a pleasure to live in. Everyone has been given his or her own set of abilities and has the capability to use these characteristics to whatever he or she deems best. We all have the right to freedom and to live life how we want it to be. But who would have thought that this right of diversity could be taken away from us just because our genes encoded something different from what the norm decides is best? Who would have thought that discrimination to an individual would go as far as genetic disorders? And in contrary to common notion on discrimination; it is now not limited to racism, sexism, body-built nor religion, but rather it extends as far as genetic abnormalities viewed and accepted in different fields. A discrimination that affects the deemed capabilities and abilities of a person; whether it is enhanced or diminished, just because of a risk and not an inevitability.
Genetic discrimination occurs when people are treated differently by peers because of a gene mutation. It is a serious issue, yet people with disorders can’t stop this and are helpless. On the other hand powerful people, even an average person can help prevent this madness.
You might see some new face from time to time, and you might even have noticed some things about them, what they are wearing, what their face looks like, or even assume what they do for living. But the one thing you won’t be able to do, no matter how long you already know a person, is to predict their future. We can make some sensible educated guesses about them but the one you won’t be able to do no matter how much some of us would like to it, is to be able to predict things. In a medical world, we want to be able to predict whether or not a person is going to develop a disease; if they do develop that disease, and how would that disease run its course? We know that DNA and our understanding of genetics are more broadly genomics, the concept of proteins, epigenetics, all of the things that interact with the genome and the environment, are able to give us insights to make more educated predictions about how a person may live into their future. And this is at the core of what we are beginning to term as predictive, preventive and personalised medicine through sequencing genes. But there’s a flipside to this new medicine. That is: if we start sequencing everybody, there may be some information that many people don’t want to know. What if it holds your chances on getting employment, having a partner, having children, insurance and health accessibility? What impact would it give if genetic information is strictly kept confidential? What effect does it have on humanity if otherwise? Aside from the worry of not knowing the disease too soon, there is also that “scary” feeling of being stigmatized and discriminated by having the disease. The fear of being discriminated also affects how the identified people are being treated by the people around them and also receive unruly treatments in job interviews, military enlistment, and many others. The question is, “would you rather know or not know”. If the disease runs for the family, would you want to get tested? Would you want to know what are the chances of you acquiring that disease? If the results say that you have a 100% chance of having it, would you believe it right away? If not, what would hold you back? With the easy access to genetic testing in today’s generation, more people are getting it. However, the results could be bad or not. If it’s the latter, then it would affect not only the person but also his family as well. With the advancement in medicine and in science, there have been so much unlocking of old puzzles. In the case of genetic testing, it really is somehow accurate in telling probabilities. However, our future does not only depend on the results of such. All of these things brought upon by the new medicine which aims to improve health of a person, start to become a problem. One of these problems is people like to interfere; people like to know things about you. We do want to select what we reveal and what we don’t. The problem we have is not the information, but it’s what we do about the information. Is that information going to be used to discriminate against you? It is wrong to discriminate. We should not be discriminating people. And the problem to some people is that they don’t necessarily have to reveal their database about their genes and that they have a genetic variation.
It is their choice to reveal if they have hereditary hemochromatosis, porphyria, Huntington disease, or Phenylketonuria. In short, our genetic information reveals some of the most personal and private data that define us and keeping control of that information is very crucial. The concept of privacy is complicated in a way that it may mean completely different from a lawyer’s view to a physician’s point of view, and from an employer to his employee’s point of view. But how is genetic information different from medical information? Isn’t genetic information under the latter? No. One thing that makes them different is how they are being expressed and shown. Genetic information, for example, can be a private information that is kept confidential or a public one that the all people have an easy access to. For instance, the girl presents to have fair skin, blue eyes, and tall stature. These are obvious phenotypes, traits physically expressed by genotypes that are found in one’s genes.
Over the past years, researches have been done in order to evaluate the effectiveness of genetic testing methods. The questions on their effectivity are more focused on the ethical considerations and on the way information is being relayed. Past mistakes include the incorrect transmission of information from the physicians to the patients. This led to having misconceptions of what having the gene for the disease really means.
In many cases, family members without the genetic risk are equally deprived of privileges by insurance companies, primarily health and life insurance, just because one member of the family had clinically visible expression of a genetic disorder. Moreover, in the area of employment, individuals are declined to be hired or attain promotion, lose their job, and even job blocked on the basis of their genotype. Meanwhile, in the area of adoption, a genetic testing is required as a condition of application consideration. Different agencies thoroughly check every possible chance that the child is a carrier or directly affected by a genetic mutation. As a matter of fact, parents who have genetic diagnosis opt to adopt are also thoroughly checked if they are unfit to parent a normal child. Basically, the decision of these agencies suggests that children at risk for disabilities do not have the right to as “good” a parent as to those children who are not at risk. Meanwhile, in the area of education, healthy siblings of a child with certain disorder are reported with mistreatment and inappropriate detention by the teachers, who incorrectly believe that they were likely to become ill. Lastly, in the area of health care delivery, pregnant women who are positive autosomal dominant carriers are reported to be pressured by their doctor to undergo prenatal testing, abort an affected fetus and to avoid future reproduction.
Clearly, these situations, observed in different fields, are representation of how unreasonable and wrong their perception of individuals whose genotype aren’t normal. Though these situations have its own positive impact, but the negative impact still outweighs it, considering the idea that: nothing will be left for them if the smallest “everything” they have is taken away. This “everything” that they have is their right, the right to be given a life with a decision they can freely choose. The fact that there life is numbered and not normal is not the life they have chosen. They did nothing wrong, yet they do not have any say to it. Agencies such as health insurance companies should be their protection, yet these offices chose to act selfishly, thinking only of the money they will get and the money they have to waste to these individuals. It’s not just a difficult life for them, it’s already a life wasted for them.
And thus, to protect the people from unjust treatment because of genetics, Genetic Information Nondiscrimination Act of 2008 (GINA) was implemented. GINA is a federal law that protects individuals from genetic discrimination in health insurance and employment.
But what exactly is genetic information and why do we need a nondiscrimination act? Well, genetic information is basically information about who you, your family and as well as your future family are. This includes family health history and genetic services results such as genetic counselling and genetic tests. These information are vital in understanding health conditions that run in your family and the risk for developing certain health conditions or having children with that particular condition. Having knowledge about these things can help you make lifestyle and medical decisions as well as give health care personnel a heads up on how to better take care of you. Well if these information are important keys on how people can understand you and take care of you, why then must it be protected by the law? Why can’t you just let everyone know the conditions that your family has and what you might possibly have or your future children might have? Here comes genetic discrimination. Genetic discrimination is the misuse of genetic information. Having knowledge about your genetic information can give opportunistic health insurers to question your eligibility for health insurance or decide that you need to pay a higher amount. In terms of employment, genetic information may affect the decision of employers on whether to hire, fire, limit, segregate, classify or mistreat you in any way since you have a predisposing condition running through your family thus the need for a law protecting such acts.
On pp 14-21 of the journal entitled The Use and Abuse of Genetic Information: Genetic Privacy and Genetic Discrimination was a cited case of a woman treated for medullary thyroid carcinoma whose daughter received the same diagnosis three years later. Since the disease is hereditary, the physician should had known and warned the daughter about it so she could have taken some precautionary measures, rather she was not informed. Hence, she filed a malpractice suit against her mother’s physician. However in the point of view of the physician, things between her and the patient is confidential and should not be disclosed to anyone, thus, she did not consider to involve any third parties. After careful consideration of the case, the court sided with the daughter. Accordingly, the court said that the physician should, in the first place, informed the patient’s family about the findings she discovered especially if it has to do with the health of some of the family members.
Another circumstance mentioned in the journal is the employer-employee scenario, where the employer wanted to know everything about its employees – family health history and medical records. The right to privacy of an employee enters while at the same time the right of an employer to appoint and dismiss workers in accordance with proper procedures also comes in. These two situations contradict each other, and illustrate one of the many complicated issues the universe has to offer.
Privacy in its multifaceted form is so broad. No one knows what the word privacy truly meant, but one is just close to what privacy is. The two situations aforementioned are example of the broader scope of privacy. When you really look into the events that occurred, both sides are right, but again no one knows who’s right or wrong. So the question is, if someone invades your privacy what will you do then? Some laws limit how information can be used, but none truly protects privacy. And that may not even be possible, because genetic information is unique to every individual. Life they say is full of biases, and with that, everyone should live with it. But the way we treat these persons should not be dictated by the presence or absence of an additional, missing, or defective chromosome. We shouldn’t limit these people just because they have a little bit less abilities than us.