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Environmental Natural Resources Law

Benefit Sharing: From Biodiversity to Human Genetics by Doris Schroeder, Julie Cook Lucas

By Doris Schroeder, Julie Cook Lucas

Biomedical study is more and more performed in low- and middle-income international locations. foreign consensus has principally been completed round the value of legitimate consent and preserving learn individuals from damage. yet what are the duties of researchers and funders to percentage some great benefits of their study with study members and their groups? After starting up the felony, moral and conceptual frameworks for gain sharing, this assortment analyses seven historic instances to spot the moral and coverage demanding situations that come up relating to gain sharing. a chain of ideas tackle attainable methods ahead to accomplish justice for study contributors in low- and middle-income countries.

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The access and benefit-sharing scheme formalized in the Nagoya protocol replaced the voluntary Bonn Guidelines on Access to Genetic Resources and the Fair and Equitable Sharing of the Benefits Arising out of their Utilization. 12 The exclusion of human genetic resources is explicitly stated in the Bonn Guidelines (2002: paragraph 9), but not mentioned in the Nagoya Protocol itself. When the Nagoya Protocol was adopted, it was made clear that ‘genetic resources’ did not include ‘human genetic resources’ in decision I/5: ‘The Conference of the Parties … [a]grees, bearing in mind decision II/11, paragraph 2, and without prejudice to the further consideration of this issue by the Conference of the Parties serving as the meeting of the Parties to the Protocol, that human genetic resources are not included within the framework of the Protocol’ (CBD 2010b).

We will reserve the word ‘ability’ for intrinsic abilities, and use the word ‘means’ for what determines contingent abilities, such as literacy, education, resources, and social and economic status. We will therefore rephrase the internal element of our definition to refer to the ‘ability or means to protect oneself’. And now we can present our final definition of vulnerability. To be vulnerable means to face a significant probability of incurring an identifiable harm, while substantially lacking the ability or means to protect oneself.

In response to the second, we will consider the conditions of vulnerability, in order to give a more precise description of the concept’s application and extension in the context of human research. The general meaning of the word ‘vulnerability’, as one finds it in dictionaries, is to be exposed to the risk of physical or emotional harm. Typical dictionary 1 This section is based on Schroeder and Gefenas (2009). examples of this complaint see, among others, Kipnis (2001), Ruof (2004), Levine et al.

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