Genetic discrimination in this context simply refers to a situation where an employer or an insurance company discriminates against an individual on the excuse that his or her genetic mutation offers a higher risk of acquiring a certain disorder. Neil F. and Ronald F. (2006,146), notes that genetic discrimination is a situation” in which individuals who are not ill are deprived of certain rights or benefits based on genetic information indicating that they are at a risk of becoming ill” Taking up a genetic test exposes one to the risk of being discriminated against based on such results.
Genetic testing provides one with an ample opportunity of knowing how vulnerable he or she is to a certain inherited disease or his or her chance of passing on to an offspring such a disorder. The question of genetic testing has all along been faced by ethical and social problems. It is a controversial topic in the public court. Controversy rages on more in the face of prospects of such results being used to deny an individual a chance of progressing career wise or being charged higher premiums by the insurance companies.
Since the launching of genetic testing thirty years ago, the issue of genetic discrimination has dominated the public courts. The advance of technology and the scientific knowledge body has left scientists in a better position of pinpointing who among the tested have greater potential of contracting a certain genetic disorder though still not to a certainty. The fear that has plagued the American public is discrimination by the employers and health insurers on such genetic testing results.
The position of this paper is that genetic results should be accessed by the prospective employers or the health insurers so as to curb instances of genetic discrimination. Tough legislations measures should be instituted to put a stop to such discrimination Americans and the world in general have at one moment in their lives experienced discrimination based on their gender, race, creed or sexual orientation. This form of discrimination remains frowned upon by the civil and human right groups. Legislations especially in the progressive nations have been instituted to curb these forms of discrimination.
It remains a crime to deny individuals services or access to public utilities solely on his or her color of the skin. Genetic discrimination is not any different. Genetic testing is relatively a modern phenomenon that has just joined the public domain; it has continued to enjoy minimal legal constraints and prohibitions. It is only in the last 10 years that it has continued to face attention and occasional criticism even from science organizations. With minimal legal supervision, it had been left at the behest of employers and health insurers to decide what decision to make in regard to the results.
This has exposed the public to the risks of discrimination on the results that may have no legal or real bearing on their lives (Billings P. et al, 1992). As a fore mentioned, genetic testing rides on probabilities. It is not certain, it only functions as an indicator of a likelihood of developing or passing on ascertain disorder but it does not pin point with certainty such an occurrence. The information provided by these test results is not enough to predict symptoms or disorders or at what time such a disorder is likely to occur. Revealing such information to the employers and insurance companies opens room for obvious bias.
Neil F. and Ronald F. (2006, 146) notes that “someone who is genetically discriminated against maybe perfectly healthy but may have an increased likelihood over the average of developing a disabling or a cost- incurring condition”. What this indicates is that there exists doubt over whether an individual, on the mere results of testing, really has such a risk or merely possesses a high potential. It has to be factored in that genetic testing is also prone to mistakes such as misrepresentation of the results. The fear of genetic discrimination is real and is based on logical arguments and sketchy evidence.
Employers and insurance companies are solely driven by economic consideration. They would wish to maximize on profits and to achieve this they have to reduce costs. Insurance companies ride on the maxim of pooling contributions from various policy holders. They prey on the probability of a certain risk occurring. Any compensation hence they make works negatively on their revenue. Genetic testing hence gives them a rare opportunity of determining the possibility of a disease occurring and hence consequently leading to higher premiums beyond the average figure.
An extreme case may result to a certain insurance company rejecting a certain application on the basis of the applicant’s results. An employer would also function along such a line of thought. Laying a hand on such genetic information, an employer maybe naturally biased against an applicant or an employee. An employer is likely to refuse to offer a job to a potential employee based on the genetic information provided if it indicates that such an individual is at risk of developing a certain disorder in the future or the fear that the productivity of such an individual will be carried down to the company’s expenditures.
A look at the study of genetics reveals that it is a phenomenon that has radically changed in the past fifteen years. Before, it was only possible to determine the possibility of the occurrence of only a limited number of complications such as sickle cell anemia. This has changed today and hundreds of complications’ occurrences can be analyzed. These tests are on the increase, presenting rising legal and social challenges, it is these fears that prompted the formation of the Human Genome Projects Working Group on ethical, legal and social implication.
The first mandate of this group was to establish the complications that were being brought forth by the advancements in the genetic testing field. It is notable that one of the concern raised by this body centered on the implications that genetics information had on insurance underwriting. In 1992, insurance companies in the United States through the Insurance Association of America had endorsed the use of genetic information by health insurers in deliberation of the amount of premiums to be paid or on the establishing of the potential risks facing an applicant.
Some studies have alluded to the fact that genetic discrimination is not widespread, especially compared to the proportion of the people that rely on private health insurance schemes and the one that benefit from Medicare and Medicaid. It is the issue of employers using such details that complicates the debate especially in the knowledge that the total number of employees that rely on medical coverage by their employers goes well above 150 million. About 15 million individuals in America though have access to privately underwritten coverage.
This is indicative of the fact that it is the employees who are likely to be the substantial culprits behind genetic discrimination necessitating its legislation The law in the past decade or has been structured to change this. Almost all the states in America have introduced legislation that aims at curbing genetic discrimination. Majority of the states have introduced rather strong laws especially to small employers offering individual health insurance schemes.
The Employee Retirement Income Security Act for example outlaws any form of discrimination against employees on the ground of expected future expenses arising from health complications. The accomplishment of these laws remains sketchy but it is obvious that they have played a role in curbing, though remotely, genetic discriminations (Cappelen, A. et al, 2008). It has to be noted that legislations against genetic discrimination may have been hampered not only by its short history but also by a number of factors. The first would be the limitation in court cases setting a precedent ruling in genetic discrimination.
The media has given wide coverage to this issue prompting the reluctance by employers and health insurance companies from using this information as a reference to employment decisions. It is this media coverage that also prompted passage of state laws prohibiting genetic discrimination, legislations whose efficiency is highly in doubt. This may have stood in the way of coming up with comprehensive federal legislation. The Health Insurance Portability and Privacy Act has been used to limit the use of genetic information.
The nature of this discrimination raises serious concerns in regard to the need to legislate and aid the usage of genetic information by the employers. This is also noted by some scholars as a possible reason to why litigations have been minimal. Genetic testing is very private and such results are closely guarded. The prospects of going forward with such results in a court case and exposing ones result may have impeded on the rate of litigations. People want to maintain the secrecy of such details and would shy away from litigating in cases where gross violations have been evidenced.
Potential employees maybe reluctant from going forward with such cases. The United States equal employment opportunity commission warns employees against discriminatory tendencies. The commission outlines the various aspects along which employers should not discriminate against. These range from color, sex, disability alongside others. People should not be denied opportunities because of their physiological traits or religion. Discriminating employees because of perceived health problems or genetic test results would fall under the Americans with Disabilities Act (ADA).
This for long had been the act that was protecting employees’ against genetic discrimination. Majority of experts and analysts agree that employers and health insurance companies should not access genetic test results of their employees. Recruitment policies for example should be structured in a way that they only rely on the current medical reports but not trying to predict occurrences of such diseases. Scientists are in agreement that there currently exists no technology or method of predicting certainly the occurrence of a disease.
Instead of using genetic results to deny employees career opportunities, employers should double their efforts in improving working conditions to make their workers feel safe rather than victimizing them on the basis of genetic test results which should be personal in the first place. They could invest in genetic monitoring although this has to be with the consent of the workers. While concerns have been voiced over the lack of a comprehensive law to regulate genetic discrimination, the current legislation reigning in the congress, though not as thorough as majority would have wished, is aimed at achieving this.
The Genetic Information Non Discrimination Act (GINA), will at least limit the use of genetic information by employers and health insurance companies. President George Bush has been a key figure in this bill and he has always vowed to legislate on it. Should it be successfully passed as law, it will witness the outlawing of the practice by the insurers and employers to deny job opportunities to healthy individuals or increasing premiums using genetic predisposition as an excuse.
Employers particularly will not be using genetic information in making employment decisions such as firing and promotions (Greely HT, 2001). Though the bill is yet to be passed into law, it is important to note that it has received considerable support across the divide in the house. One major point provided by those that support the bill is the potential of the genetic information being misused should it fall in the wrong hands.
The NH National Human Genome Research in support of the bill says it is important to protect all individuals from any discrimination that may arise. This is important so that the public may wholeheartedly support advancements in biomedical research. Should legislation also be put in place, it will go a long way in encouraging patients to take a genetic test aimed at diagnosing any disorders. Also it is important to note each and every individual has genetic defect and hence prone to genetic discrimination. Clarisa L. and Karen R.
, (1999, 86) says that one good reason for restricting employers and insurance companies is the need to “encourage research” noting that “if we cannot assure patients that their genetic information will be kept private or at least that physicians will do the best way they can to keep it confidential, patients will not want to be research subjects” It has also to be noted that there are a few cases that have been reported in genetic discrimination. Documentation of such incidents is scanty. In spite of this though, the fears that exist are real. Legislation hence has to be put in place to allay such fears.
If individuals in the United States stand to profit from the genome research, legislation has to be put in place. Release of genetic information also violates the ethics of public health which appreciates the centrality of privacy and confidentiality. Genetic testing raises ethical questions. Health and medical practitioners are bound by their professional ethics to keep the patients’ information and details closely guarded. Genetic information is no exception. Just as this testing is done at an individuals own volition, it should also be his or her prerogative to choose who to access such information (Rothenberg K, Fuller B, 1997)
Though all evidences and arguments points towards the direction of eliminating genetic discrimination and denying employers access to genetic information, there are still substantial amount of support by employers to using the genetic information in making their employment policies such as hiring and firing and also in setting of premiums. Corporate employers and health insurance companies are up in arms and preparing to lobby for a legislation that is favorable to their cause. Michele S. , and Erin D.
(2006) notes that “opposition to genetics non discrimination legislation continues to come from some members of the insurance industry and the genetic information nondiscrimination in employment (GINE) coalition which includes the US Chamber of Commerce” (p 2). One major argument being fronted is that there should be no additional laws instituted as the current laws are adequate. One point they note is that extra legislation is unfair to their cause, they further question why they should be prevented from accessing genetic information and yet the law does not prohibit them from using other health information?
Employers also note that they should not be curtailed from accessing genetic information as in the first place there have been very few cases of such discrimination reported. Those employers that acknowledge the need for such legislation note that a legislation if introduced should leave a room for the protection of other workmates in an organization “it should be narrowed to acknowledge that employers should be able to make employment decisions based on information that some workers with specified genetic markers could pose a significant risk to others” (Michele S.
, and Erin D, 2006. ) These arguments though may hold water if viewed from the employers and the health insurers’ perspective, are detrimental to the general public welfare. It is the duty of the government to protect the public against discrimination of any form. Genetic discrimination is a new concept and people should be protected. The fact that there have been few cases reported, it does not mean that this is not a prevalent practice. Such cases may have been muffled by the inexistence of a comprehensive legislation to check it.
There are also those who argue that prohibiting insurance companies from using genetic information may have detrimental effects to the applicants. The basis of this argument is that those that have been tested and found to have perfect genes will be forced to pay high premiums similar to those that are genetically defective. This is a lopsided argument though for if one has a perfect health and has not foreseen any risks of developing a medical complication, the most prudent thing to do would be not to take up an insurance cover.
This hence cannot be used as an excuse to employers and insurers accessing genetic information. It is more than apparent that the acquisition of an individuals’ genetic information by the employer and the health insurance companies is at the detriment of such an individual. Genetic discrimination is a practice where and individual is discriminated against by either an employer of by the health insurers solely because of his her genetic composition. Employers and health insurance companies are driven by the need to maximize productivity and minimize cost respectively.
By accessing individuals’ genetic information, employers are likely to discriminate against some employees in the important issues such as promotions. The health insurers on the other hand use this information in the calculation of the amount of the premiums to pay, setting higher premiums for those with detected defects than the average ones. This is a form of discrimination that bears no difference to others that are based on gender or color. There exists a ranging controversy between the insurers and the employers on one hand and the employee and the civil rights activists.
Most people ranging fro scientist and policy makers believe that a proper and a comprehensive legislation is required to curb the employers access to individuals genetic information so as to curb genetic discrimination.
References Cappelen, A W, Norheim, O F, Tungodden, B (2008). Genomics and equal opportunity ethics. J. Med. Ethics 34: Billings PR, Kohn MA, de Cuevas M, Beckwith J, Alper JS, Natowicz MR. ,1992. Genetic discrimination as a consequence of genetic testing. Am J Hum Genet
Rothenberg KH, Fuller B, Rothstein M, 1997. Genetic information and the workplace: legislative approaches and policy challenges. Greely HT, 2001. Genotype discrimination: the complex case for some legislative protection. Univ PA Law Rev Clarisa Long, Karen Rothenberg, 1999. Genetic Testing and the Use of Information. Rothenberg. American Enterprise Institute. Nowlan, WA, 2002. Rational View of Insurance and Genetic Discrimination. Science no. 297. Michele Schoonmaker, Erin Dominique, 2006. Genetic Testing: Scientific Background