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

By Doris Schroeder, Julie Cook Lucas

Biomedical learn is more and more conducted in low- and middle-income international locations. foreign consensus has mostly been completed round the value of legitimate consent and maintaining learn contributors from damage. yet what are the obligations of researchers and funders to proportion the advantages of their learn with study members and their groups? After commencing the felony, moral and conceptual frameworks for profit sharing, this assortment analyses seven old situations to spot the moral and coverage demanding situations that come up in terms of profit sharing. a sequence of thoughts tackle attainable methods ahead to accomplish justice for study contributors in low- and middle-income countries.

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Extra resources for Benefit Sharing: From Biodiversity to Human Genetics

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Non-monetary benefits may include, but not be limited to: (a) Sharing of research and development results; (b) Collaboration, cooperation and contribution in scientific research and development programmes, particularly biotechnological research activities, where possible in the Party providing genetic resources; (c) Participation in product development; (d) Collaboration, cooperation and contribution in education and training; (e) Admittance to ex situ facilities of genetic resources and to databases; (f) Transfer to the provider of the genetic resources of knowledge and technology under fair and most favourable terms, including on concessional and preferential terms where agreed, in particular, knowledge and technology that make use of genetic resources, including biotechnology, or that are relevant to the conservation and sustainable utilization of biological diversity; (g) Strengthening capacities for technology transfer; (h) Institutional capacity-building; (i) Human and material resources to strengthen the capacities for the administration and enforcement of access regulations; (j) Training related to genetic resources with the full participation of countries providing genetic resources, and where possible, in such countries; (k) Access to scientific information relevant to conservation and sustainable use of biological diversity, including biological inventories and taxonomic studies; (l) Contributions to the local economy; (m) Research directed towards priority needs, such as health and food security, taking into account domestic uses of genetic resources in the Party providing genetic resources; (n) Institutional and professional relationships that can arise from an access and benefit-sharing agreement and subsequent collaborative activities; (o) Food and livelihood security benefits; (p) Social recognition; (q) Joint ownership of relevant intellectual property rights.

Vulnerability’ refers to a substantial incapacity to protect one’s own interests owing to such impediments as lack of capability to give informed consent, lack of alternative means of obtaining medical care or other expensive necessities, or being a junior or subordinate member of a hierarchical group (CIOMS 2002). The commentary on this guideline provides a corresponding description of vulnerable persons. Vulnerable persons are those who are relatively (or absolutely) incapable of protecting their own interests.

S17), even research participants who are not directly harmed or coerced can be exploited, in the sense of not receiving fair benefits. Not involving human beings in research at all is obviously not an answer. Medical progress relies on scientific research. If nobody agreed to take the latest tuberculosis drug during an experimental phase, none of us would ever get access 20 G. Arnason and D. Schroeder to it. If nobody allowed their blood to be sampled for the latest strain of viruses, progress in the development of vaccines would be significantly hampered.

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