Representation of Genomics Research Among Latin American Laymen and Bioethics: A Inquiry Into the Migration of Knowledge and Its Impact on Underdeveloped Communities

The effects of genetic knowledge beyond the scientific community depend on processes of social construction of risks and benefits, or perils and possibilities, which are different in different communities. In a globalized world, new developments affect societies not capable of technically replicating them and unaware of the very nature of the scientific process. Moral and legal consequences, however, diffuse rapidly and involve groups and persons with scant or no knowledge about the way scientific concepts are developed or perfected. Leading genomics researchers view their field as developing after a sharp break with that worldwide social movement of the 20́s and 30́s known as eugenics and its most radical expression in the Nazi efforts to destroy life "not worth living". Manipulation, prejudice and mistrust, however, pervade non-expert accounts of current research. Researchers claim that the new knowledge will have a positive impact on medicine and serve as a foundation for informed social policy. Both types of applications depend on informed communities of non-scientists (physicians, policymakers), whose members may well differ on what constitutes burden and what is benefit, depending upon professional socialization and cultural bias. ELSI projects associated with genomic research are notable for the lack of minorities involved and for the absence of comparative analysis of data reception in different world communities. It may be contended also that the critical potential of philosophical or ethical analyses is reduced by their being situated within the scientific process itself and carried out by members of the expert community, thus reducing independence of judgment. The majority of those involved in such studies, by tradition, experience, and formative influences, share the same worldview about the nature of moral dilemmas or the feasibility of intended applications. The global effects of new knowledge when combined with other cultural or religious traditions are thus unknown. These effects are interesting on two accounts. First, even if underdeveloped countries cannot replicate the technical aspects of research, their influence on social practices is not kept within geographical or language barriers. The way they are handled in developed countries may become part of resistances to "ethical imperialism". Second, these advances have economic consequences. Their full understanding and the creation of a scientific literacy essential for sound ethical analysis demand the creation of "receptive capacity" in developing countries. The morality of genomics research and its applications can be analyzed from two main vantage points. Some traditions stress the ethics of convictions (in Max Webeŕs terms, Gesinnungsethik) while others rely on the ethics of responsibility (Verantwortungsethik). In different forms, the latter deals with the consequences of social action, scientific research in this case, and may or may not be related to utilitarian considerations. It may be hypothesized that convictions, mostly of a religious nature, dominate the argumentative preferences in Latin countries and continental European traditions which rely on virtues while responsibility is associated with a discourse based on rights prevalent in countries following the Anglo-Saxon pattern of thought. This finds expression in different legal systems (common law versus codes) and in the language used for deliberation and moral reasoning. Although results of US-based ELSI research may not be transferable to other cultural and economic contexts, they impact other societies and serve as models. Rarely do they apply completely in other settings. In a globalized world, both appropriate understanding of the scientific enterprise and its ethical or economic sustainability demand empirical analysis of the patterns of thought, main beliefs, and reactions toward the new knowledge and its applications. Anecdotal accounts show that expectations may be misleading and inadequate knowledge prevents appropriate appraisal of burdens and benefits in different societies.