Assuntos
Pesquisa Biomédica/ética , Revisão Ética , Consentimento Livre e Esclarecido/ética , Sujeitos da Pesquisa , Pesquisa Biomédica/normas , Comportamento Cooperativo , Revisão Ética/normas , Privacidade Genética/ética , Guias como Assunto , Humanos , Consentimento Livre e Esclarecido/normas , Cooperação Internacional , Sistema de Registros/ética , Bancos de Tecidos/éticaRESUMO
As scientific knowledge about gene-environment interactions and the role of epigenetic factors in gene expression grows, new possibilities for personalized medicine may be opened up. In particular, the associations that have been demonstrated between epigenetic markers and certain diseases are an exciting development for personalized medicine. These advances also create new ethical challenges, regarding causal and moral responsibility, due to unique characteristics of how epigenetic effects regulate gene expression, are established and may change over the course of a person's life. This article examines the ethical implications of integrating epigenetic knowledge into personalized medicine.
RESUMO
This paper questions the utility of the ethical principles that are usually invoked to deal with genomic issues, particularly genetic databases. Concepts such as solidarity, benefit sharing, equity, public participation, and collective identity are discussed. The author argues that genetic banks are precipitating new concern over group interest, as opposed to concern over issues arising from individualistic medical ethics. Genomics era needs new paradigms in ethics. An individualistic approach based on choice and autonomy is not useful, because we make choices not only as individuals but also as members of different groups. The doctrine of informed consent evolved in different historical conditions from the ones we face in the era of genomics. This is complicated by the global context of genetic research, in addition to powerful commercial interests. This suggests that it is not sufficient to move from an individual-centred ethic approach to a morecommunity-centred one; an approach of renegotiating the relationship between individual and community. We need also to be clear about what the interests at stake are, which may mean reconceiving the terms ÔindividualÕ and "community" in this context and the ways in which their interests are affected, identifying the sources of collective identity that are at stake.