The Social, Ethical, and Economic Implications of the Human Genome Project for Society - Term Paper Example

 The Human Genome Project promises a revolutionary insight to the genetic “blueprint” of the human body. Consider The Social, Ethical, And Economic Implications Of This Project For Society, and The Potential For Applications Of This Research. Abstract. This paper introduces the Human Genome Project, with a brief history of its creation and a summary of its main aims and achievements thus far. There is then a consideration of the social, ethical and economic implications of genetic research. Social implications include major advances in medical treatments, but also changes in people’s attitudes and behaviour due to new procedures like testing when symptoms arise or screening before any disease syptoms are apparent. Ethical issues include balancing individual interests against the interests of others, and such considerations as potentially racist applications and unforeseen consequences of information which gene-related activities can produce. Some of the most critical issues such as privacy and the desire not to know are highlighted. Financial implications for society at large, private companies and for individuals are explored. Finally there is assessment of the extent to which the Frankenstein metaphor applies to this project. The paper concludes that the Human Genome Project is an extremely powerful resource which can be used for good or evil purposes, and that we have resolved some, but by no means all, of the major ethical issues that it brings. The Human Genome Project promises a revolutionary insight to the genetic “blueprint” of the human body. Consider the social, ethical, and economic implications of this project for society, and the potential for applications of this research. Genetic engineering is a relatively new science, which rests on the pioneering work of Gregor Mendel on the garden pea, leading to the formulation of Mendel’s laws in 1866. (Thomas, 2003 pp. 1-3). It was only some fifty years later that the true significance of his discoveries was realised. The legendary work of Watson and Crick on the double helix structure of DNA in the middle of the twentieth century provided the basis for what we now know as the field of genetic engineering. It is very clear from Watson’s recollection of his research (1998) that he and his colleagues were caught up in an immensely exciting search for new knowledge. They were motivated by scientific curiosity and, as in so many laboratories, the focus was on the pure science, theories and explanations of what was going on at the tiniest possible levels of genes and chromosomes within the human body. At this stage there was very little concern for the ethical and moral implications of these new discoveries. The field of genetics made further progress with the invention of effective gene sequencing techniques in the mid 1970’s. At first only tiny viruses and bacteria were studied, but with advances in computing and automation, more complex organisms could be studied. Throughout the 1980s techniques improved so considerably that attention turned to the human genome. The Huntingdon’s disease gene was mapped to chromosome 4 in 1983 (Collins and McKusick: 2001, p. 541) but this was only a first step towards accurately locating the disease to its specific position there. There was no systematic way of sequencing all of the genes, and the scale of the task, encompassing some 3 billion base pairs, defeated even the best technology of the time. More resources were needed to tackle such a huge task. In 1989 both private and publicly funded organisations began to map the whole human genome. An international consortium was set up in 1990 and named the Human Genome Project. At this stage, finally, some of the more serious implications of the project were realised, and a portion the funding amounting to between 3% and 5% was set aside for exploration of the moral and ethical issues attached to the research. (Collins and McKusick, 2001, p. 540) Over a period of 13 years, the Human Genome Project was carried out in various locations, including the USA, the UK, Europe and China. It is probably the biggest single collaborative scientific project that the world has ever seen and it proceeded much faster than was originally anticipated. Finally in 2003 it was announced that the task had been completed. A rough blueprint of the human body was in place, and its contents were made freely available for all scientists in the world to download. Many details remain to be explored, and there is room for improvement in the cost and complexity of the technology used in genetic engineering work. This first working draft began to produce multiple new avenues for research. This is only the beginning of the story, however, since many diseases involve more than one gene, and there are other factors such as lifestyle and individual variants which can be difficult to pin down. The benefits of the Human Genome Project in the area of medicine seem at first to be overwhelmingly positive: “The implications for diagnostics, preventive medicine, and therapeutics will be profound.” (Collins and McKusick: 2001, p. 540) This new knowledge about heredity can assist doctors in identifying illness, offering advice on how patients can change lifestyle or environmental elements to minimize any risk that they may be genetically predisposed to, and perhaps most exciting of all, new therapies may be developed to treat serious illnesses like cancers and Alzheimer’s disease which have thus far proved very difficult to treat. For society at large, a great deal of human suffering can be relieved through gene therapies and this is a major argument in its support. An extremely contentious area of genetic engineering is that of predictive genetic tests which aim to identify specific risk factors for individuals. People with a history of a particular illness in the family can obtain predictions of the likely risk that they might have. Such tests are available in many countries for diseases such as breast cancer and colon cancer. If risk is found to be higher than average, increased screening and other preventive measures can be taken to pre-empt the start of the disease or indicate quickly when intervention by a health practitioner is necessary. One necessary consequence of this application of the Human Genome Project’s results is that a far wider range of medical practitioners will have to become familiar the complex statistical projections. Not only that, but someone will have to take responsibility for educating the public on what those complex projections mean. There is great potential for misunderstanding of statistics, particularly when probability is involved, rather than precise actual measurements, and not everyone is sufficiently well educated to grasp fine distinctions. There is a danger that over-simplifying things for a layperson’s level of understanding could lead to unrealistic expectations or unnecessary apprehensions, both of which can have quite serious implications for a person’s mental health and wellbeing. The involvement of other professionals such as social workers may well be crucial in bridging this information gap. (Miller and Martin: 2008) There are further ethical issues such as possible discrimination and exploitation of vulnerable individuals or groups. There could be discrimination against a whole population which has increased incidence of a hereditary disease, for example. Another contentious application of the Human Genome Project is the work of an offshoot organisation called the “Human Genome Diversity Project” which was set up in 1994 to collect tissue samples from indigenous peoples in order to preserve cell lines and genes. Because the people in such indigenous societies have very different ideas about science, and about individual and collective ownership of hereditary material, there are many who doubt that scientists have in any real sense obtained informed consent for such work. Some see this work as exploitative, treating people as objects, much in the way that biologists and botanists collect samples in order to write papers about new discoveries or build up databases for their own, or for future as yet unknown purposes. There are political implications of this work too: “Some ethicists argue that this project is neo-colonialism, exploiting ethnic groups for a resource of current value, with the goal of patenting cells or genes.” (Becker and Becker: 2001, p. 1479) Even potentially helpful applications such as diagnostic testing and screening are ethically problematic. The fact is that the information derived from such procedures can have very far-reaching consequences: “In contrast to ordinary medical diagnosis both genetic screening and genetic testing touch upon the questions of future generations and as a consequence they go beyond the sphere of moral and personal rights of one single individual concerned (e.g counsellee).” (Sandor, 2010, p. 182) So, for example, a couple considering parenthood will take decisions affecting their family life for ever. A woman taking tests to determine whether her breast cancer is a hereditary form or not, will possess information which is highly relevant for her daughters and their children. Disclosure or non-disclosure of results, and to whom, become then difficult decisions which may involve the interests of several different people. Because of the burden of guilt and apprehension that such knowledge can bring, many people prefer not to take such tests. Guidelines for counsellors often suggest that there are situations where confidentially with respect to one person can be breached in certain cases where there is potential harm to other persons (Smith et al., 1998, p. 146), and this raises some very worrying implications. Ethical issues can also overspill into the area of economics. The possession of knowledge about a person’s genetic disposition towards life-threatening or debilitating diseases can have major implication for life planning and for economic dimensions of a person’s life such as employment and insurance. If a patient, or a health professional becomes aware of hereditary factors from genetic testing, there are difficult dilemmas to face for client, health professional and insurers. Insurance companies rightly point out that it is not fair that their clients should be aware of risk factors, and yet not disclose them, but on the other hand clients wishing insurance fear discrimination and higher charges if they do disclose that they have a higher risk in one or more areas of health. Most industry professionals operate within professional frameworks such as this one from the IFSA (Insurance and Financial Services Association) in Australasia: Genetic testing will not be a requirement for assessment of risk for a policy but if a genetic test has been undertaken the insurance company will ask that the results be disclosed. The insurance industry will not use the information from one family member for risk assessment of another family member. (Barlow-Stewart: 2007, p. 250) The wording of these guidelines, with phrases like “the company will ask…” rather than “will demand” or “will require” reveals some uncertainty about legal liability and the possibility (or not) of enforcing compliance on either side. In practice it is likely that the client would risk invalidating the insurance if the relevant information were not disclosed, or being rejected if he or she refused to provide results. In the UK, there is a moratorium on the use of genetic tests by insurance companies for policies under £500,000 which runs until the end of 2014. (Nuffield Bioethics: undated, p. 151) There is, however, nothing to stop individuals acquiring personalised genetic profiling, including the use of private genetic testing services which can be accessed from abroad. The debate on how to regulate this whole area in the UK is still on-going. This makes it very difficult for medical professionals, patients and insurers to know how to proceed in an ethical way. It seems that the interests of each of these three groups are somewhat contradictory, and this will require some elements of control and some elements of discretion for each party. Exactly where the lines are drawn will have to be worked out. The large scale economic implications of human genome research are also somewhat hard to predict. Experience has shown that preventive measures can be very much more cost- effective than treating serious illnesses, and so there is an incentive to plough resources into this kind of research. There is, however, a big step between the possibility of new treatments and their introduction for widespread used in society. Much more research is needed into factors such as finding effective vectors for the delivery of the gene to the required place. Clinical trials with human patients take a long time to conduct, and there are many limitations and controls which have to be catered for. Even when a treatment is developed, tested and approved, it still may be very expensive to produce and to administer to patients. The cost factor could mean that many, or even most, patients will never have access to this advanced care. What is possible is not the same as what is deliverable, and this could cause much distress when people are aware that a diagnosis, therapy and even possible cures for their conditions are available, but not accessible to any but the very rich. Another significant economic impacts of recent genetic engineering developments is that therapies will become more individually tailored, and that the pharmaceutical industry will have to adapt their procedure to take account of new drug types which operate at the molecular level using insights from the field of genomics. This will undoubtedly involve higher costs and investment in new equipment. “Although millions of dollars are being spent on identifying genes and gene fragments, it is but a fraction of what is required to determine gene function and develop and test drugs and diagnostics.” (Cunningham: 2003, p. 86) Cunningham goes on to point out that public funding alone will not be sufficient to meet these costs, and so private enterprise will, in the future, always be necessary if the Human Genome Project is to bear fruit in the form of usable treatments. Private enterprises will always seek a return on their investments, whether it be through patenting, or protection of resulting products, and the economic impact of this could be very great. Besides the predictable and intentional outcomes of human genome applications described above, there is also the risk that some interventions can cause unintentional outcomes, some of which can be harmful. Examples of this can be seen in pre-natal testing which can harm the unborn baby or the mother, or which could even reveal issues of paternity which cause major upset in the family. These tests can change aspects of social relationships, sometimes for many years afterwards : “Genetic screening of children may have a harmful effect on the children screened: it may lead to greater parental concern, which may have a negative effect on the psycho-social functioning of the child.” (Hoedemaekers: 2010, p. 212) The long list of potential dangers arising from genetic engineering has led some people to claim that it is a “Frankenstein technology” with potential to create freakish monsters by means of ill-advised experimentation on human beings. Certainly, inappropriate use of information in the Human Genome Project could lead to some serious consequences for individuals and society. Some uses such as sex testing of a foetus in order to select male or female children is a form of Eugenics. This is condemned in most of the world, but in some cultures it is practised quite widely. Similarly the attempt to produce human clones goes beyond most people’s estimation of what is fair and morally acceptable, but scholars remind us that there are in the world “rogue geneticists” who will provide purchasers with illegal genetic material, and that it is almost impossible to prevent this. (Brownsword: 2007, p. 39) Altering human embryos in order to enhance certain qualities or features, a process which the press calls the production of “designer babies” or collecting mass genetic databases, traceable back to the donors, for police use, or ill-defined future research would are also a clear breach of human rights. Scientists, working together with politicians, educators and ethics specialists need to work hard on formulating regulations and guidelines which set appropriate boundaries for professionals working in and around the field of genetics. There is potential for great benefits and also for abuse of the Human Genome Project and this paper has shown that ethical dilemmas in this area are as yet only partly resolved. Reference List Barlow-Stewart, K. 2007. Some ethical issues in human genetics. The Australasian Genetics Resource Book. Centre for Genetics Education. Available online at: http://www.genetics.com.au/pdf/factsheets/fs23.pdf Becker, L. C. and Becker C. B. 2001. Encyclopaedia of Ethics. 2nd Edition. London and New York: Routledge. Brownsword, R. 2007. Red lights and rogues: regulating human genetics, in H. Somsen (ed) The regulatory challenge of biotechnology: human genetics, food and patents. Cheltenham: Edward Elgar. Collins, F. S. and McCusick, V. A. 2001. Implications of the Human Genome for Medical Science. Journal of the American Medical Association, 285, pp. 540-544. Available online at: http://jama.ama-assn.org/content/285/5/540.full.pdf+html Cunningham, P. C. 2003. Is It Right or Is It Useful? Patenting of the Human Gene, Lockean Property Rights and the Erosion of the Imago Dei. Ethics and Medicine 19 (2), pp. 85-89. Hoedemaekers, R. 2010. Genetic screening and testing: A moral map, in R.F. Chadwick et al. The Ethics of Genetic Screening. Norwell, MA: Kluwer, pp. 207-230. Miller, V. L. and Martin, A.M. 2008. The Human Genome Project: Implications for Families. Health and Social Work 33 (1), pp. 73-38. Nuffield Bioethics. Undated. Personal Genetic Profiling. Availabe online at: http://www.nuffieldbioethics.org/sites/default/files/files/Personalised%20healthcare%20-%20Chapter%209%20Personal%20genetic%20profiling(1).pdf Sandor, J. 2010. Genetic Testing, genetic screening and privacy, in R.F. Chadwick et al. The Ethics of Genetic Screening. Norwell, MA: Kluwer, pp. 181-190. Smith, D.H. et al. 1998. Early Warning: Cases and Ethical Guidance for Presymtomatic Testing in Genetic Diseases. Bloomington: Indiana University Press. Thomas, A. 2003. Introducing Genetics: From Mendel to the Molecule. Cheltenham: Nelson Thomas. Watson, J. 1998. Double Helix. New York: Prentice Hall. Read More