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Bioethics and Human Rights:The Challenge of Universal Standard Setting in the Context of the Human Genome Project
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Although bioethics and human rights are often pursued in isolation,they have similar ends. Human rights refer to an internationally agreed upon set of principles and norms embodied in international legal instruments,while bioethics is seen in terms of reflection on past traditions and beliefs and the attempt to reach reasoned consensus in the midst of the dilemmas posed both by new technology and by re-evaluation of current health practices in the light of changing social norms.1608982

The advance in the fields of molecular biology and genetics are of such great significance that they affect not only all the spheres of ordinary life (diet,methods of procreation or production of energy) but they also compromise the destiny of the human species. The ethical reflections raised around these questions has been called bioethics,with its principles being introduced later into internal laws of a state,mainly in matters such as organ transplant,methods of reproduction and medical experimentation,and has also very recently begun to be visible in standard setting in international law.

The confrontation between the individual’s intrinsic value as a person,and the implicit risk associated with the advance of science in challenging this value is especially visible in reference to the Human Genome Project.1608983 From the development of this particular project it can be extrapolated that the person is a biological manifestation of the programme of instructions codified in his/her DNA. Thus the individual human person loses his or her overall personality and,instead,is reduced to his/her constituent components.

By contrast other work related to the genome research,such as the Human Genome Diversity Project (HGDP),raises the fear that people may be reduced to the generic class of “categories of persons”. By promoting collecting,storing and studying the genetic materials of human population groups rather than individuals,this project opens “... the door for potential widespread use and abuse of collective human genetic materials for scientific,commercial and military purposes,as well as for other similar projects currently under way or under development”.1608984

This reductionist view of the understanding of human beings and groups do not correspond with reality (i.e. I does not take into account external factors which cannot be forecast even with full knowledge of the genetic sequence that constitutes its make-up.)

However,some of the risks that have been highlighted above in the context of the reductionist view remain very real and arguably justify the need for regulation. A good example of this is visible in the context of the food industry. Here serious problems have arisen with cattle and avian diseases,as unchecked exploitation of technological progress has been harnessed for profit.

Nowadays,there is a widespread conviction that it is necessary to adopt or create rules at international level to address some of these perils in order to protect persons and to prevent the growth and development of “biotech safe havens”.1608985 Prohibiting research and application in this sphere is probably not a realistic/desirable solution;instead,regulating how its fruits are to be utilised seems to be increasingly necessary to prevent permanent damages to individuals,groups of individual,and/or the humanity as a whole.

Human dignity is the only non-controversial concept that has been used as a starting point for a discussion seeking to regulate bioethics. This is because one of the main problems that arises in the evolution of biology is the commodification of the human being,who is at risk of disappearing and being reduced to his/her organic elements. Besides the abstract concept of human dignity,the elaboration and creation of general norms and standards seem an almost impossible task for several reasons.

Firstly,the manner of understanding this intrinsic value is the focus of much discussion;secondly,codification in and of itself,is extremely complicated because distinctions such as man/woman,life/death,person/thing which are in the very foundations of the law,can not only be easily manipulated,but is also subject to interpretation and external interference. As it has been stated:“The law is frequently based on purely biological facts and considerations and the biological revolution,in turn,poses new questions for the law”.1608986 Finally,the effort at maintaining such distinctions and concepts are viewed by some as unnecessary hurdles and obstacles in the path of progress.

Since the abstract concept of “human dignity” seems to be the only consensual one,bioethics researchers have sought this as a natural link into the field of human rights. Thus,the normative instruments that have been developed so far in response to this scientific revolution have focused on the protection of human rights. Much of this focus has manifested itself under the rubric of the right to health. Progress in the field of genetics is claimed as being necessary for a healthier population as well as in the cure of fatal diseases. However it is clear that research in this field may put at stake the very survival of human beings as species. Depending on the assumptions made,the content of this right in the context of bioethics will be significantly different from its treatment in other contexts. As highlighted by Stephen Marks:

... state’s obligation to respect the right to health requires that no government agency participate in or fund dangerous genetic manipulation;that the obligation to protect includes preventing the biotech industry from engaging in such activity;and that its obligation to fulfil means that its legislative,executive,and judicial branches act to suppress such activities,and inform the health professions and the population of the dangers. Using contrary assumptions about the risks and moral implications,these same obligations could be invoked to engage the national health system and other organs of the state in tolerating,promoting,and practicing genetic manipulation.1608987

The impact of the new technologies and research also raises questions of potential new sources of discrimination,with deeper differences between poor and rich. In this context the obligation of the State to ensure that medical practitioners and other health professionals meet appropriate standards of education,skill and ethical codes of conduct is particularly relevant.1608988 Much attention has been paid to the appearance of such new violations of human rights and the potential development of technologies which may only improve the quality of life of healthy and wealthy instead of the sick and poor. Particular emphasis has been given to the right to enjoy the benefits of scientific progress and liberalisation of trade in confrontation with intellectual property rights and the question of patenting.1608989 The All Genome sequence generated by the Human Genome Project is deposited in a public database (GenBank) and freely accessible by Internet.1608990 However the practice of patenting the application of genes and sequences of genes is commonly admitted by the main states involved in such research.1608991

The complexity and multidimensional character of the problems related to bioethics is inversely proportional to the number,clarity and precision of existing international norms to deal with that topic. I will briefly point out the efforts undertaken at international level to set up some uniforms standards.1608992

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