Emerging Issue: Human Genome Project - Report Example

Emerging Issue: Human Genome Project d Emerging Issue: Human Genome Project The improvement in Genetics has allowed humankind to fight with malicious diseases in a unique manner. Human Genome Project (HGP) is one such major and extremely beneficial development in this field. However, increased research and knowledge of human genome has raised several ethical, legal and social concerns. The project’s progress has ignited a great debate in scientific and moral terms on issues such as patenting of human gene sequencing, provision of private genetic information of commercial use and the danger of the transmittal of its negative impacts to further generations. All these are discussed in the research, using a Potter Box ethical decision-making methodology: STEP 1: Defining the situation: The Human Genome Project Initiating in 1990, the HGP is an international scientific collaboration, which seeks to decode genetic information contained in cells of the body, that is, in the chemical deoxyribonucleic acid (DNA). This project has been undertaken with laboratories around the world with an effort to locate 100,000 gene-sites contained in the DNA. Technological advances enabled the scientists to understand the significance of the base sequences of DNA, which greatly aided the HGP. Nearly twenty to twenty five thousand genes have been recognized in a human cell’s nucleus (Fasman, 2008). The Case for HGP HGP is revolves around the theory that all the inherited makeup is a variant of the basic human model. It is hoped that the genetic information obtained from the project will help prevent or cure the diseases which are genetically based, such as cancer, diabetes, cystic fibers etc. MacKinnon (1998) notes that the information obtained will also be able to detect predispositions to diseases in the human beings. In short, control over genetic formations will make it possible to remove genetic disorders and diseases from human beings. The Case Against HGP Despite the fruits that HGP would bring for the human existence, the science of Genetics and more specifically the HGP has raised many ethical concerns for humanity. Ciaffa (2003) discusses two general categories of its ethical implications: Genetic engineering and genetic information. The mapping of human genome, in genetic engineering, would help the scientists to determine various psychological and physical characteristics, opening up the possibility of altering them. This difference rests upon two fundamental differences i.e. the difference between somatic cell and germline intervention, and the difference among therapeutic and augmentation engineering. The somatic cell treatment is often accepted by most ethicists, because its effects are restricted to the individual only. However, germline manipulation alters reproductive cells, thus affecting the genetic compositions of forthcoming generations. Its risks go beyond one generation; hence it raises many ethical concerns regarding problems such as greater side-effects on future generations. Therapeutic engineering is used to rectify disorders or diseases, which makes it productive for humankind. However, enhancement engineering raises significant ethical concerns, because it involves extension of human traits beyond their normal levels. The ethical questions thus raised are those which would involve change in perceptions, traits and attributes in the coming generations. The second category of genetic information relates to the two major ethical concerns to healthcare that Thomas H. Murray (1996) proposed, that are likely to be prompted by HGP: The first one is justice, which raises questions like the allocation of genetics technology and its effect on other services such as organ transplant and disease prevention methods. Second one is therapy and enhancement technology, as explained above. Murray (1996) also proposes that it is important to consider the ethical implications of HGP in the light of costs and care management pressures on the U.S. healthcare. He also assesses the role of physicians and doctors after the application of HGP technology, one of which would involve prediction of diseases that are likely to occur to a person. This will also have an impact on the employment and insurance policies, largely affecting the future lives of human beings. There would be discrimination on the basis of genes through the process of genetics testing. Although this was dealt with in the form of GINA (i.e. Genetic Information Nondiscrimination Act), which was signed by the then President of the US, President G.W. Bush in the year 2008 that forbids employers and the insurance firms in the U.S. to discriminate on the basis of gene-testing (in accordance with the U.S. Department of Energy Office of Science, Office of Biological and Environmental Research, Human Genome Program, 2008), yet this largely needs to be implemented universally. Sinsheimer (1983) notes another case against HGP applications: the “privacy” aspect. It is a huge question whether or how the genetic information will be kept secret in patenting and using for treatment by public or private companies. For example, Myriad Genetic announced the finding of a gene linked to breast cancer treatment and also intended to patent it. The HGP, apart from all its medical and ethical concerns, is not without some grave economic implications. Matthew J. Elrod-Erickson and Ford (2000) have discussed various effects of HGP on the U.S. economy. Only till 2001, $2 billion was spent on the basic research funding of HGP whereas similar research was being carried out in the private sector. The formation of “Celera Genomics” is one such example of a private corporation, formed by the president of Institute of Genomical Research, which is engaged in a similar research. Similarly, the commercial investment and development phases involve billions of dollars of funding by public and private companies of the U.S. to discover and invent gene-based medical treatment procedures. It is not just intended to be restricted to human development, but its research is also intended to be extended to food, agriculture, animals and plants etc. STEP 2: Identifying the Values According to Taylor (1986), it is important to consider our lives in relation to those that exist with us in this world. Hence, our role as “moral agents” must not be forgotten which demands that not just self-preservation is necessary, but thinking of lives that exist around us is also mandatory. Hence the question that how biological knowledge can be used and for what purposes is not a scientific, but an ethical question and requires sufficient consideration. In the light of the literature with respect to ethical concerns, my stance in the controversy is towards the criticisms on the project. As seen above, the cases against HGP outweigh the favourable cases. Although the merits and future implications of its findings seem a blessing for the humanity, it has farfetched negative implications which may change the entire composition of humanity as well as its genetic, familial and hereditary compositions. Of course, we can also not exclude other matters such as privacy of genetic sequences and various economic concerns that come with this. Here, I would not say that the research that came along with the project and followed later should altogether be abandoned, rather, it should be limitised while considering the various ethical implications, on humankind, healthcare as well as on the economy. My conclusions about the project have largely been driven by the value theory, which has three major components: principle of autonomy, principle of beneficence, and the principle of justice. The principle of beneficence (Levine, 1986) is in context to the compulsion about the conservation of the welfare of humanity as a whole, and not just considering one or two aspects. The principle of autonomy requires that no major decision be taken without the consent of the patient, or in the case of non-adults, his/her parents. The principle of justice (Rawls, 1971) relates to the fundamental principle of equality and justice for all – meaning provision of equal opportunities to all in every field. STEP 3: Identifying the Principles The ethical dilemma of HGP can be analysed with various ethical theory concepts. The matter can be seen in the light of Kant’s notion of categorical imperative, which takes two forms: one must consider doing something that he believes that can be applied to everyone, and treat oneself and humanity as an end, and not a means (Curzer, 1999). This clearly supports my stance of HGP explicated in the preceding section. It is important to treat human beings equally, and have the morals of fairness, consistency and autonomy for all. Hence, while evaluating the applications of HGP, it is important to consider equal application and consequences for all, and not just one segment of humankind. Mill’s concept of Utilitarianism (LaFollette, 1997) requires the application of the best alternative which produces the greatest net utility (happiness) for the greatest number of people. This complements the above notion of not restricting the benefits to a particular segment of humankind, rather extending it to most people. The economic aspect of HGP can be evaluated with the Cost-Benefit Analysis, a special version of utilitarianism (MacKinnon, 1998). This demands that a project or venture is best if its benefits exceed its costs. Since it is often expressed in money, the economic implications of HGP can be evaluated with in the light of this analysis, in which benefits do not exceed its costs. Rawl’s Veil of Ignorance requires people to make decisions after considering ourselves in the place of those whom the decision will influence. In the HGP, it is ethically very important to consider the impact on future generations and the various implications that its magnified costs and side-effects that the general population will have. Ultimately, its negative points far exceed the positive ones. STEP 4: Making the Right Decision – Conclusion While considering the formation of policies and decisions regarding the application of HGP discoveries, it is important to consider all the ethical concerns that surround the project. Even while some people will be benefitting in the short run, its long-term effects cannot be ignored. In this, it is significant to note that who gets hurt and who benefits from this. Despite the various cost-exceeding-benefits and other ethical concerns, it would not be entirely feasible to drop this project at once. It has provided genetic knowledge that would help the humanity to fight and prevent various malignant diseases and disorders caused in genes. Rather, a mechanism for its application needs to be set. What can be done, at first, is to involve all major (developed) countries in the research process, and then extending the research to developing countries where these diseases are more common. Also, the use of genetic technology can be limited to certain severe cases, and not in every case, to avoid its negative impacts. Laws such as GINA mentioned above need to be formulated and implemented to ensure ethical and societal problems caused due to genetics. Hence, all these measures can make HGP a beneficial project for the humanity. References U.S. Department of Energy Office of Science, Office of Biological and Environmental Research, Human Genome Program. (2008, September 16). Genetics Privacy and Legislation. Retrieved April 1, 2010, from Human Genome Project Information: http://www.ornl.gov/sci/techresources/Human_Genome/elsi/legislat.shtml Ciaffa, M. L. (2003, August). The Human Genome Project: A Scientific and Ethical Overview. Retrieved April 2, 2010, from American Institute of Biological Sciences: http://www.actionbioscience.org/genomic/carroll_ciaffa.html Curzer, H. J. (1999). Ethical Theory and Moral Problems. New York: Wadworth Publishing Company. Fasman, K. H. (2008.). Human Genome Project. Microsoft® Encarta® 2009 [DVD]. Redmond, WA: Microsoft Corporation. LaFollette, [. b. (1997). Ethics in Practice: An Anthology. Massachusetts: Blackwell Publishers. Levine. (1986). Ethics and Regulation of Clinical Research. Baltimore: Urban & Schwarzenberg. MacKinnon, B. (1998). Ethics: Theory and Contemporary Issues. New York: Wadsworth Publishing Company. Matthew J. Elrod-Erickson, W. F. (2000, October). Economic Implications of the Human Genome Project. Retrieved April 1, 2010, from Business Services Industry: Rawls, J. (1971). A Theory of Justice. Cambridge, Mass: Belknap Press of Harvard University Press. Sinsheimer, R. L. (1983). Genetic Engineering: Life as a Plaything. Technology Review , 86 (3), 14-70. Taylor, P. W. (1986). Respect for Nature: A Theory of Environmental Ethics. New Jersey: Princeton University Press. Thomas H. Murray, M. A. (1996). The Human Genome Project and the Future of Health Care. Bloomington: Indiana University Press. 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