Legal and Social Issues Surrounding Genetic Testing - Literature review Example

Issues Concerning Genetic Information Genetics is one of the fields of human science that has lately taken the biggest toll on the effective determination of critical matters. From cases dragging in the court rooms for years, to parentage, presence in scenes of crime and the role of the individual in the scene, genetics effect is real. This paper seeks to assert why parents need to have their genetic makeup determined early and the ethical, social and legal consequences of abiding by this necessity. The risks accompanying public’s knowledge of the individual’s genetic vulnerability and an individual’s failure to have their DNA tested are also analyzed. Ethical, Legal and Social Issues Surrounding Genetic Testing One of the greatest endeavors in modern research and studies is the determination of the levels of certainty with which facts can be presented. The study of statistics has found wide application in nearly all disciplines since, though in its early stages of formulation it was highly opposed, it tries to explain why almost everything is not exactly predictable. Surprisingly, even the highest levels of scientific developments are riddled with uncertainty. One of the areas where these mathematical concepts mingle with highest levels of confidence is in the study of genetics. The determination of the genetic composition has been touted as one of the greatest steps in science’s quest for certainty, or the closest hint at certainty. A study sponsored by the US Department of Energy credits Walters (1999) forecast that in future, we will see prenatal interventions to prevent severe and irreversible damage to fetuses and gene transfer to prevent or treat neurological disease. Such assertions have piled pressure to responsive adults to want to know whether their offspring will be safe from high exposure to genetically transferred diseases and other undesired traits. But several factors stand on the way for potential parents to freely undertake the exercise. Naturally, the moment individuals find out that their genetic makeup will expose their child to a certain disease, special care is advised by the medical expert in charge. However much the individuals to whom the news is broken are advised to keep the results to themselves, it is not practical that the information will fail to leak to other individuals in the same society. Asplen (1999) noted that one of the factors that contributed to negative perception among the public is that DNA technology in the USA developed as a prosecutorial tool, rather than an investigative one. This has had the mental impact that the mention of DNA analysis triggers the audience to think of criminal participation by the party under focus. . Giving the issue a rational view, genetic testing has rightfully found its place in the modern society. Many preventable diseases in the past could not be stopped owing to lack of this advanced technology. According to Walters (1999), there are several ways in which medical experts can ensure that the offspring are free from undesired traits within their parents’ genetic makeup. One is through gene addition. By this process, where the genetic composition of the parents seems to suggest suppression of a certain desired trait, intervention will be made to add the desired gene into the parents’ makeup. Hirschler (2007) wrote in a Reuters article that doctors had operated on a small number of patients suffering from Lebers congenital amaurosis, a type of inherited childhood blindness caused by a single abnormal gene. This example provides insight into the necessity of this technology. The article continues to add that the handicap has no cure. Such a case represents the irresistible benefits of genetic intervention to a medical situation thought to be beyond the scope of ordinary medical intervention. The second option that Walters (1999) projected for interested individuals is replacement of the undesired genes. This would involve searching for these genes, splicing them out and replacing them with the recommended ones. This, he predicted, would be carried out automatically the same way a word function is used to replace a term for a new one. Germline genetic intervention is targeted at protecting the future generations from diseases or susceptibilities posed by handing down of the ‘wrong’ traits. Among the inadequacies that can be dealt a blow by this intervention are congenital disabilities. In particular, Walters (1999) pointed to the possible liberation of a family line from the fragile X (Escalante’s) syndrome that is a single gene cause of autism. The recessive mucoviscidosis trait could also be eliminated through gene transplant. Walters (1999) argues in favor of germline genetic intervention noting that it is way more efficient than repeating gene therapy generation after generation. However, not all diseases can be prevented through intervention at the pre-conception stage. Some would call for intervention at a later stage, including the embryonic stage. Gold (1999) notes that the gains made in the field of genetics are irreversible, and the world can only prepare to play to the tune. He further notes that the consequences have so far been positive, and we can only expect greater things from its advancement. Practically, germline genetic intervention is slowly taking the place of immunization. The difference is the stage of intervention at which the intervention occurs. Whereas immunization is carried out mostly post-birth, genetic intervention is carried out earlier, at the imagination of conception. Along this line the merits can be clearly drawn. One of the biggest highlights is that immunization has no impact on the future generations. For this reason, the world lives in perpetual fear of the same diseases that dogged the continents since the 20th Century. In other words, immunization is effective in the current individual but their offspring will be as much prone to the same diseases as their parents were before they got immunized. Genetic intervention ensures that the undesired gene is eliminated henceforth, setting aside the need for treatment of the same among the siblings. Another worth highlight is the range of diseases and handicaps that genetic intervention is able to treat, which immunization cannot. The efficiency of the exercise is founded upon identification of the unwanted genes so that only they can be replaced. For this reason the genes found to cause previously unpreventable occurrences such as abnormal formation of body structures that would result in permanent handicaps can be removed and all the good qualities retained. The obvious fact is that no parent wishes to give birth to a handicapped child, and genetic intervention is the surest way for parents to avoid the agony associated with bringing up such children. In view of the above facts, it is paramount that parents rhyme with this movement in technology, for its benefits are astounding. The national health insurance cover, like other major national amenities, has for long been geared towards ensuring equity and non-discrimination. However, this objective has not always been achieved. Among the issues that have slowed down equal entitlement to supply with essential amenities are such factors as levels of usage of individuals and preference for other premium services. However, the government through adequate legislation strikes a balance to protect its interests and those of the less fortunate who by far rely on its services. Genetic testing is voluntary and relatively expensive. The consequences of taking this test are at times beyond what an individual can expect. Disclosure of sensitive information may lead to discrimination. The levels of discrimination may be experienced at different levels. For example, staff whose unfavorable medical genetic examinations results leak around the work place may be subjected to social and economic discrimination at the workplace. Examples of social discrimination may include isolation, excommunication by colleagues and sensitive handling by fellow workmates. On the other hand, economic discrimination may be even more severe, especially when the individual is forced to pay more to access services offered to others at a lower cost. The most acceptable reason for this type of ‘discrimination’ is the economic class of the individual. On this basis for example individuals and corporations pay tax owing to their economic might. The same factor may be extended to payment of health premiums. Until now, the need of the individual cannot be used as a basis to charge them higher. Indeed, it is almost surely accepted that the need for one to pay higher is when their requirement for a service is immediate. For instance, when an individual visits a health center with more complications will be attended to at a higher fee than one with fewer complications. The Genetic Information Nondiscrimination Act (GINA) was passed and assented to by the presidency in 2008. The Act prohibits insurance companies from discriminating against their clientele on the basis of the results of a genetic test results (US Department of Energy 2008). Owing to the various pieces of legislation in place, it would be odd to expose those whose results indicate higher susceptibility to certain genetic diseases to higher payments for medical insurance and treatment. However, that fact should not contradict the requirement for higher fee when the type of service requested rates thus. GINA further prohibits employers from making adverse employment decisions based on the results of a genetic test of an employee. Owing to the freedom guaranteed by this Act, Americans are now free to pursue genetic testing for such diseases as cancer without the fear of discrimination (HGPI 2008). This is an important factor to emphasize in the struggle to achieving equal treatment for all. A popular question in this front is: who then absorbs the shock of the treatment expenses for those diagnosed with these relatively costly diseases to treat? The answer can best be derived from the fact that most Americans will find the costs exorbitant and since genetic inheritance has no boundary, both the rich and the poor will be prone to the unfortunate disease conditions in equal measure. That means a cost-sharing undertaking is inevitable. For this to be achieved the government has little option but invest more on medicare, to caution those not well economically endowed. This will ensure that patients with proven genetic problems and health issues are not discriminated against for that would be equal to opening room for future discrimination on other issues. The reasons for individuals’ refusal to cooperate with the ambitious plan to have every American tested for genetic diseases and consequently treated for the same can be explained basing on earlier events that opened up space for discrimination, especially among the minority groups. The scope of the tests is not limited to curing of diseases alone but rather spans wide. For example at some point the tests have been used to measure the inter-racial IQ differences and seek answers to the possible differences. This touches on an aspect that has been with us too long and that the world is trying hard to overcome- racial discrimination. What if the results pointed to the possibility that a certain race is inferior to others in terms of IQ? The HGPI edition on Minorities, Race and Genomics (2007) articulates the fears faced with such ambitious tests. The researchers who met at university of Maryland, Baltimore in 1997 were all apprehensive over how the results of the ethical, legal and social issues (ELSI) would be used. Concerns ranged from the fear of actuarial classifications of "genetic exceptionalism" to the burden African Americans would face if they were among those labeled by some as a biological underclass (HGPI 2007). Therefore the question of racial discrimination is the biggest thorn towards convincing every American to undergo genetic testing for whatever other genuine reason there may be. In order to overcome this fear and enjoy the rewarding fruits of undertaking such tests, the use of such results must be guaranteed. The bottom line is the people must enjoy the results of their inventions and science must as well be allowed to unravel every fact possible. The results of the tests of genetic makeup among the different races and people from different geographic locations are not certainly predictable, and scientists have tried to take every possible step to avoid embarrassment in this front. The government intervenes whenever researchers fail to acquire the necessary ethical documentation for a study. This is just a step towards ensuring proper handling of the results of a research project. Newswise cited JAMA’s article that highlighted the consequences met to Joachim Boldt, M.D., whose 88 out of 102 of research published by since 1999 was retracted after a government investigation reported research misconduct reflecting failure to acquire ethical approval for research and fabrication of study data (2013). Before these sensitivities are effectively cleared and the public well sensitized about the benefits of taking the genetic tests and issued with guarantee about the safety of their results, it is still a far dream to think of charging individuals who fail to attend genetic testing higher insurance premiums. Once these hurdles are removed, it still remains to convince that anyone should pay higher for their unwillingness to take genetic tests. The precedent is already set. For example, there is no law that can justify extra taxing for HIV/AIDS patients. On the other hand the matter of failure to undergo a specific medical test cannot be taken to mean that the individual is suffering from a disease in the category concerning the test. Plainly, it is not possible that the government will be able to effect higher medical insurance premiums on individuals who do not honor the quest for individual genetic awareness. Conclusion Whereas genetic testing is a voluntary exercise, there is no foreseeable prospect that the exercise will at some point in the future be declared compulsory. The only justifiable claim to this requirement is where the parents’ lineage has been proven to be highly prone to certain diseases or handicaps that could only be dealt with by genetic transplant or some other genetic engineering mechanism. For this reason it is not possible to subject anyone to hiked health insurance premiums payments since the exercise itself is not a requisite for determination of how much an individual should pay to the insurer. The level of susceptibility to genetically instigated disorders and diseases can not be used to determine whether one can again pay higher insurance premiums. This move would be discriminative and obviously meant to make some affected poor feel much of a burden to the state. The attitude of discrimination arising thereof would be the result of rejection, guarded against by the constitution. The benefits accompanying genetic testing for parents are not something authorities can wish away. However, it is certainly not very easy to convince the population to adopt any new plans without first explaining the extent of the participation of the individual and their privacy. When this has been guaranteed, it will not be difficult to bring the issue forth with much less resistance. Genetic testing has real benefits for the population. Reference list Asplen, C. (1999). From Crime Scene to Court Room: Integrating DNA Technology into the Criminal Justice System. Judicature: Genes and Justice. Vol 83 (3). Web, 18th February 2013. Drell, D. (2000). The Human Genome Project: What a Legal Assistant Needs to Know. The Journal of Legal Assistants. August 2000  Vol XXVII Issue 2. Web, 18th February 2013. Hirschler, B. (2007). Doctors Test Gene Therapy to Treat Blindness. Reuters. Web, 20th February 2013. Newswise (2013). Intravenous Fluid Used for Critically Ill Patients Linked With Adverse Outcomes. Web, 19th February 2013. < http://www.newswise.com/articles/intravenous-fluid-used-for-critically-ill-patients-linked-with-adverse-outcomes> US Department of Energy Human Genome Program. (1999). Ethical Issues in Human Gene Therapy. Human Genome News Archive Edition. Vol. 10, No. 1-2. Web, 18th February 2013. US Department of Energy Human Genome Program. (2008). Breaking News: GINA Becomes Law May 2008. Genetics Privacy and Legislation. Web, 20th February 2013. US Department of Energy Human Genome Program. (2007). Minorities, Race and Genomics. Web, 20th February 2013. US Department of Energy Human Genome Program. (2010). Genetic Anthropology, Ancestry, and Ancient Human Migration. Web, 17th February 2013. Read More