Literature DB >> 17038005

Sharing the benefits of genetic resources: from biodiversity to human genetics.

Doris Schroeder1, Carolina Lasén-Díaz.   

Abstract

Benefit sharing aims to achieve an equitable exchange between the granting of access to a genetic resource and the provision of compensation. The Convention on Biological Diversity (CBD), adopted at the 1992 Earth Summit in Rio de Janeiro, is the only international legal instrument setting out obligations for sharing the benefits derived from the use of biodiversity. The CBD excludes human genetic resources from its scope, however, this article considers whether it should be expanded to include those resources, so as to enable research subjects to claim a share of the benefits to be negotiated on a case-by-case basis. Our conclusion on this question is: 'No, the CBD should not be expanded to include human genetic resources.' There are essential differences between human and non-human genetic resources, and, in the context of research on humans, an essentially fair exchange model is already available between the health care industry and research subjects. Those who contribute to research should receive benefits in the form of accessible new health care products and services, suitable for local health needs and linked to economic prosperity (e.g. jobs). When this exchange model does not apply, as is often the case in developing countries, individually negotiated benefit sharing agreements between researchers and research subjects should not be used as 'window dressing'. Instead, national governments should focus their finances on the best economic investment they could make; the investment in population health and health research as outlined by the World Health Organization's Commission on Macroeconomics and Health; whilst international barriers to such spending need to be removed.

Entities:  

Keywords:  Biomedical and Behavioral Research; Genetics and Reproduction; United Nations Convention on Biological Diversity

Mesh:

Substances:

Year:  2006        PMID: 17038005     DOI: 10.1111/j.1471-8847.2006.00148.x

Source DB:  PubMed          Journal:  Dev World Bioeth        ISSN: 1471-8731            Impact factor:   2.294


  9 in total

Review 1.  What Do the Various Principles of Justice Mean Within the Concept of Benefit Sharing?

Authors:  Bege Dauda; Yvonne Denier; Kris Dierickx
Journal:  J Bioeth Inq       Date:  2016-01-29       Impact factor: 1.352

2.  Sharing the benefits of genetic research.

Authors:  Doris Schroeder; Miltos Ladikas; Udo Schuklenk; Carolina Lasén Lasén Diáz; Anita Kleinsmidt; Fatima Alvarez-Castillo; Dafna Feinholz
Journal:  BMJ       Date:  2005-12-10

3.  Benefit sharing: it's time for a definition.

Authors:  D Schroeder
Journal:  J Med Ethics       Date:  2007-04       Impact factor: 2.903

4.  Stakeholders understanding of the concept of benefit sharing in health research in Kenya: a qualitative study.

Authors:  Geoffrey M Lairumbi; Michael Parker; Raymond Fitzpatrick; English C Mike
Journal:  BMC Med Ethics       Date:  2011-10-03       Impact factor: 2.652

5.  Attitudes towards transfers of human tissue samples across borders: an international survey of researchers and policy makers in five countries.

Authors:  Xinqing Zhang; Kenji Matsui; Benjamin Krohmal; Alaa Abou Zeid; Vasantha Muthuswamy; Young Mo Koo; Yoshikuni Kita; Reidar K Lie
Journal:  BMC Med Ethics       Date:  2010-09-16       Impact factor: 2.652

6.  Forms of benefit sharing in global health research undertaken in resource poor settings: a qualitative study of stakeholders' views in Kenya.

Authors:  Geoffrey M Lairumbi; Michael Parker; Raymond Fitzpatrick; Michael C English
Journal:  Philos Ethics Humanit Med       Date:  2012-01-17       Impact factor: 2.464

7.  What Egyptians think. Knowledge, attitude, and opinions of Egyptian patients towards biobanking issues.

Authors:  Ahmed S Abdelhafiz; Eman A Sultan; Hany H Ziady; Ebtesam Ahmed; Walaa A Khairy; Douaa M Sayed; Rana Zaki; Merhan A Fouda; Rania M Labib
Journal:  BMC Med Ethics       Date:  2019-08-09       Impact factor: 2.652

8.  A framework for the promotion of ethical benefit sharing in health research.

Authors:  Anja Bedeker; Michelle Nichols; Taryn Allie; Tsaone Tamuhla; Peter van Heusden; Olorunyomi Olorunsogbon; Nicki Tiffin
Journal:  BMJ Glob Health       Date:  2022-02

Review 9.  A scoping review of considerations and practices for benefit sharing in biobanking.

Authors:  Allan Sudoi; Jantina De Vries; Dorcas Kamuya
Journal:  BMC Med Ethics       Date:  2021-07-27       Impact factor: 2.652

  9 in total

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