The main question explored by the book is: How can cross-border access to human genetic resources, such as blood or DNA samples, be governed in such a way as to achieve equity for vulnerable populations in developing countries? The book situates the field of genomic and genetic research within global health and research frameworks, describing the concerns that have been raised about the potential unfairness in exchanges during recent decades. Access to and sharing in the benefits of human biological resources (...) are aspects not regulated by any international legal framework such as the Convention on Biological Diversity, which applies only to the exchange of plants, animals and microorganisms, as well as to associated traditional knowledge. Examples of genetic research perceived as exploitative are provided in order to illustrate the legal vacuum concerning the global governance of human genetic resources. The main conclusions drawn from the legal and ethical analysis are: - Benefit sharing is crucial in order to avoid the exploitation of developing countries in human genetic research. - With functioning research ethics committees, undue inducement is less of a concern in genetic research than in other areas of medical research (e.g. clinical trials). - Concerns remain over research involving indigenous populations; accordingly, recommendations are provided. In drawing these conclusions, the book addresses in detail a highly pressing topic in global bioethics and international law. In this regard, it combines bioethical arguments with jurisprudence, in particular with reference to the law of equity and the legal concepts of duress (coercion), unconscionable dealing, and undue inducement. (shrink)

In this paper, I examine the conflicts between autonomy and justice. The problem of justice in healthcare concerns both micro-allocation and macro-allocation. The latter has to do with distributive justice: who should get what healthcare resources at whose expense. The current debate about healthcare reform brings up two competing models of distributive justice from political philosophy. The libertarian theory holds to the ideal of individual responsibility and choice, viewing taxation for the purpose of providing goods to those who cannot afford (...) them as a form of unjustified coercion. The liberal theory holds that society should ensure that all members are provided with basic goods that correct for inequalities that deprive them of human dignity. Even though both theories value individual choice, these theories provide opposing answers to the question of whether taxes should be collected and used for the purpose of ensuring universal access to healthcare. In my paper, I show that neither theory can respect patient choice in healthcare and achieve distributive justice. Libertarians ignore the realities of the healthcare system and why a free market where patients choose and pay for what they want cannot exist. Liberals face the problem that the choices that patients make can lead to over-consumption of healthcare at the expense of other goods important to society. (shrink)