Ethical problems in health research with indigenous or originary peoples in Peru
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ORIGINAL ARTICLE
Ethical problems in health research with indigenous or originary peoples in Peru Gabriela Minaya 1 & Joel Roque 1
Received: 2 March 2015 / Accepted: 18 May 2015 # Springer-Verlag Berlin Heidelberg 2015
Abstract The varied, abrupt and amazing geography of the land of Peru is home of one of the major concentrations of indigenous peoples in the world. The asymmetry of power, however, in their relationship with the rest of society and the State is still very evident in their social exclusion, their gap in social and economic development, barriers in their access to health services as well as their marginalization and exploitation as subjects of health research. In this paper, we analyse two cases of research on indigenous populations in Peru, discuss them from the point of view of bioethics and reflect on important issues for researchers, research participants and the society, such as the need to respect different cultures, the need that the research being done is relevant to the needs of the population in which it is conducted and the necessity to empower indigenous communities in participatory research, to strengthen the institutions and to protect human rights, namely through ethics committees for research and the free, informed and meaningful informed consent. This approach should foster quality research, while at the same time fully respecting human rights and bioethics. We cannot forget that advancements in genetics, throughout the world, are very much in debt to indigenous populations. Keywords Indigenous peoples . Vulnerable populations . Genetics piracy . Biocolonialism . Health research . Informed consent This article is part of the special issue on BGenetics and Ethics in Latin America^ * Gabriela Minaya [email protected]; [email protected] 1
Instituto Nacional de Salud, Cápac Yupanqui 1400, Jesús María, Lima 11, Peru
Introduction Undoubtedly, the chief aim of scientific research should be the progress of society. Nevertheless, its implications and consequences for humankind as a whole, including future generations, must be taken into account. In this respect, and particularly in Latin America, indigenous peoples deserve special consideration for several reasons, not least the fact that throughout the world they have been subjugated and exploited for many centuries. In this paper, we describe and discuss ethical problems that have been prevalent in biomedical research on indigenous peoples in Peru and are similar to what has happened throughout Latin America over many decades. We use indistinctively the terms indigenous or originary peoples, defined as people who are descendants from populations that inhabited the region before the time of conquest and colonization, and who, independently of their legal status, have preserved all or part of their social, economic, cultural and political institutions, and that, at the same time, self-recognize themselves as such (Law No. 29785 2012). While in the last several years there has been more recognition of the rights of indigenous people, th
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