Genetic Code: Privacy, Health and Discrimination - Essay Example

?Running Head: GENETIC TESTING Genetic Genetic Privacy, health, and discrimination Genetic Privacy, health, and discrimination One of the biggest problems within the United States is the idea that health care should be a privilege rather than a right. The right to education is acknowledged without prejudice to income, but the right to be healthy and capable of reaching one’s highest potential is considered a privilege through the insurance system. With advancements in establishing health frameworks through the analysis of the genetic code, insurance and the healthcare industry are furthering discrimination through proposals that will impact those with disadvantaged genetic code results. Additionally, this will create an excuse for classifying insurance premiums based on genetic code results. The concept of defining individuals through their genetic code has the potential for allowing the rise of a society that classifies people without allowing them the potential to prove themselves through merit. Through the excuses that will develop in codifying genetic potentials, access to healthcare will be even further restricted through high costs to those who need it most as an inequity comes from classifying people by the potentials for illness and conditions that may never manifest. The discussion of using genetic codes as a way to classify people in relationship to insurance premiums and procreation potentials stems from a belief that health care is a privilege rather than a right. In addition, it discounts intellect, making health a more important factor to the human race. Imagine a world in which Stephen Hawking had never been conceived due to the potential of his condition. Stephen Hawking, who suffers from amyotrophic lateral sclerosis (ALS), is also one of the leading authorities on physics, having fundamentally changed the perceptions of the universe through his writings and research on topics within the discipline (Larsen 2005). ALS can be a result of certain genetic markers that can be identified and is likely to see more genetic anomalies emerge as further research discovers more similarities between those who develop the illness. At present, however, not all of those who have the genetic markers that are common develop the disease. The disease is shown to be inheritable in 10% of all cases, and it is possible that it occurs because of a mutation in the VABP gene (Pierce 2012). Further research may, and likely will, expand understanding of how individuals get this disease, providing for interpretations of the genetic code that can predict the potential of getting the illness. If this is the case, children of parents who test positive for this potential, for which there would likely be no prediction of an actual mutation of the VABP gene, would be classified for ALS. If this was the case, would the world have seen Stephen Hawking if genetic testing of parents was used to determine the potential of their child having ALS? The fact is that the costs of the medical care for Stephen Hawking are far overshadowed by the benefits his research and strands of thought have brought to understanding the universe. What is risked by classifying people by their genetic make-up is losing intellectual capacities that would have a far greater impact on the advancement of humanity. Diversity of health situations is one of the ways in which experience defines the existence of life. No one wants a debilitating disease, but this does not mean that life with one should be considered unworthy merely by the fact of the disease. When parents determine the potential for illness within their children through genetic classifications, they run the risk of believing that children with the potential for disease are not worthy of life through their procreative efforts. This is at cross purposes to what is best for society. The fear of discrimination in relationship to genetic testing is so potent that it has caused laws to be enacted to fight the potential for discriminatory practices. Rothstein (2007) writes that “Since the Human Genome Project began in 1990, nearly every state has enacted legislation prohibiting genetic discrimination in health insurance; two-thirds of the states have enacted laws prohibiting genetic discrimination in employment, and other state laws have been enacted dealing with genetic discrimination in life insurance, genetic privacy, and genetic testing” (p. 59). The importance of protecting people from discrimination through genetic codification and classification is a fear that has permeated society to the point that legislative bodies have acted to protect society from that potential. Rothstein (2007) goes on to discuss that the fear of discrimination through genetic testing is specific to the fear of the predictive quality of genetic testing. Rothstein (2007) also makes the point that genetic testing in relationship to predictors that would affect health insurance premiums is a moot point in countries with national health care systems exists and where health care is considered a right rather than a privilege. The fear of discrimination that has inspired such stern and swift legislation has been brought about by a system that is elitist where health care is concerned. A couple who show the potential for illness in their children might otherwise face punishment through the insurance system through higher rates merely by a potential that may not come to pass. Further potentials for discrimination exists in employment where a child who has been marked or classified as having the potential for an illness might in adulthood face prejudice in attaining employment despite meritocratic achievement. A society that classifies its citizens through quantification takes the risk of oppressing potentials that might otherwise exist for an individual. An example of this potential exists today in relationship to women’s diseases that can now be recognized as potentials through genetic testing. Breast cancer and ovarian cancer can be determined as a possibility through genetic testing, but many women opt not to be tested because they fear it can be used to discriminate against them in relationship to employment (National Partnership for Women & Families on behalf of the Coalition for Genetic Fairness, 2004). The National Partnership for Women & Families on behalf of the Coalition for Genetic Fairness (2004) reports that the “2001 American Management Association survey of U.S. firms found a number of employers already accessing genetic information … one percent was conducting genetic tests for Sickle Cell Anemia, 0.4 percent was testing for Huntington’s disease” (p. 3). In addition, “14 percent were conducting workplace susceptibility testing which surveyors acknowledged might include genetic testing, and 20 percent were requesting family medical histories” (The National Partnership for Women & Families on behalf of the Coalition for Genetic Fairness, 2004, p. 3). Information is power and in having information on the genetic potentials for disease a legitimate case can be made for either raising insurance premiums or firing employees that would raise insurance rates. Morris (2010) states emphatically that” The world has never faced a technology with such persuasive potential to predict present and future medical health and inherent human behavior” (p. 252). Morris (2010) goes on to discuss the nature of actuary fairness with the concept that more information allows for predicting factors that will affect the way in which rates are assigned. As an example of this type of fairness, Morris (2010) discusses the fact that 30 years ago asking whether or not a person smoked or not would be considered ethical where it is standard practice today and is considered during the underwriting process. He proposes that it is possible that the ethical nature of genetic practices might follow suit. In addition, he suggests that the fairness involved is about making sure that rates cover necessity and that the survival of the industry depends upon rates having an association with profit. Morris (2010) goes on to discuss, however, that there is a great difference between actuary fairness and what society deems as fair. A smoker chooses an activity that impacts their health, but genetics is something one cannot self-determine. In addition, this perpetuates the idea that health care should be assigned only to the elite, those who are genetically clean enough to qualify at an affordable rate. Those who cannot afford health care and are financially unable to pay for their own care are then further outside of quality care, leaving them to suffer without medical intervention. The gap between income levels would then be punctuated with a genetic difference through which superiority and inferiority would likely be assigned. The social implications of dividing people based upon their genetic testing results is grave and should be considered deeply before that type of information becomes commonly used. Bennet and Smith (2007) suggest that this can lead to the classification of the “healthy ill” who are not sick, but have a genetic predisposition to one illness or another and are therefore excluded and classified in such a way as to make employment and health care more difficult (p. 2488). Social divisions have had a long history of promoting inequity across socio-economic lines, creating classifications that are rarely relative directly to the reason behind their description. The example of Henrietta Locks whose cells were taken without the permission of her family and used through generations of cancer research is one way in which misuse of medical power can have an impact on individuals. Because her rights were not considered, her cells are now immortal and have lived on long past her own lifespan, and without the permission of her family. Her family, on the other hand, lives in poverty and cannot afford the health care that her cells have generated through research. This example shows that the medical community must not be given power to determine the use of the genetic material of individuals without proper protections (Le Roux, 2011). Through genetic classification, the same type of outcome is possible in that perfectly healthy adults will spend their lives punished by a genetic test that may never prove out within their lifetime as relevant to their health. The only person who should have the right to act on genetic testing is the individual as they determine, with their doctor, if a course of action is prudent in countermanding the potential that is read within the genetic code. Testing parents should never be mandatory and should be left, once again, to the desires of the individual in relationship to the decisions that they will choose to make. Without diversity, not only in cultural differences, but through health differences, it is possible that intellectual discovery would be hampered. Stephen Hawking is a prime example of what the world would lose should genetic codes be used to determine birth potential and the value of human life. Health care should be a right, not a privilege and it is this distinction that is causing this debate to have relevance. Health care should not be a matter of insurance, but rather a matter of public right so that inequity is not created in relationship to health care access. In making a decision to genetic predetermination on the potential of the emergence of a costly disease, society will lose the potentials of those individuals who are punished for something for which they have no control (Wilkinson, 2010). Genetics are not like smoking or drinking, choices or addictions that are made that impact health. Encouraging parents to have genetic testing is a way of trying to control that which cannot be controlled. The potential for disease cannot be eliminated, nor does the potential mean that the illness will occur. Creating divisions through any means in relationship to genetic testing is going to create an elite and a disadvantage set of classes through which more social inequity will occur. Resources Bennet, P. & Smith, S. J. (2007). Genetics, insurance and participation: How a Citizens’ jury reached its verdict. Social Science & Medicine. 64: 2487-2498. Larsen, K. (2005). Stephen Hawking: A biography. Westport, Conn.: Greenwood Press. Le Roux, T. (March 2011). Review essay: The immortal life of Henrietta Lacks. Journal of Family Theory & Review.3: 54-65. Morris, L. A. (June 2010). Life insurance and genetic tests: Risks for insurers and society. Health, Risk, & Society. 12 (3): 251-270. National Partnership for Women & Families on behalf of the Coalition for Genetic Fairness. (July 2004). Faces of genetic discrimination: How genetic discrimination affects real people. Washington D. C.: National Partnership for Women & Families Pierce, B. A. (2012). Genetics: A conceptual approach. New York: W.H. Freeman. Rothstein, M. (19 May 2007). Genetic exceptionalism and legislative pragmatism. Journal of law, Medicine & Ethics. 35 (s2): 59-65. Wilkinson, R. (2010). Unjustified Discrimination: Is the Moratorium on the use of Genetic Test Results by Insurers a Contradiction in Terms? Health Care Anal. 18: 279- 293. Read More