DE ORTUZAR Maria Graciela
capítulos de libros
Towards a universal definition of benefit sharing
Populations and Genetics. Legal and Socio-Ethical Perspectives
Martinus Nijhoff Publishers
Lugar: Leiden/ Boston ; Año: 2003; p. 413 - 487
Abstract On the "Statement on Benefit Sharing"(2000), The HUGO Ethics Committee defined "Benefit Sharing" as "a benefit that contributes to the well being of an individual and/ or a given community (e.g, by region, tribe, disease- group)...Thus, a benefit is not identical with profit in the monetary or economic sense. Determining a benefit depends on needs, values, priorities and cultural expectations" .This concept of "benefit sharing" was previously established by the "Convention on Biological Diversity" (CBD,1992) as a principle of international law in the area of biodiversity and genetic resources in food and agriculture, ratified by 175 countries In both statements the relationship between genetic resources, prior informed consent and local indigenous communities has an important place in determining a relative concept of benefit sharing. In this respect, HUGO Committee recognized the absence of universal rationale and definition ("community problem") as well as the problem of the implementation of benefit sharing ("private industry problem") In the present paper, I will argue that the compensation forms underlying international law and the definition of benefit sharing for genetic research should be based on a universal theory of justice, a universal theory of human needs, and a Theory of Obligation. Key concepts for "universal benefit sharing" should be the universal concept of "common heritage" , "individual informed consent , "universal health needs", and "justice as imparciality". I will defend independent monitor implementation of this international policy agreement, particularly because mutually agreed terms between users and stockeholders involved in the transfer of genetic resources cannot be fair when the contracting parties do not have the same transactional power. Finally, I suggest that this international law should also apply a universal tax for patents obtained from all genetic research, which must be destined for investment in new genetic research and treatments for developing countries, as a form of technology transfer compensating the "worst situated" (Rawls). It must ensure that the benefit of this new genetic knowledge would be received by all human beings who share the same genetic heritage.