Genomics and Benefit Sharing with Developing Countries – From Biodiversity to Human Genomics.
Genbenefit is a Specific Targeted Research Project with a total budget of 548,639 Euro.
- Advance knowledge and ethical insight into existing benefit sharing frameworks with regard to human genetic resources.
- Explore paradigmatic international case studies to identify ethical concerns and possible solutions.
- Create an international network of experts and stakeholders on benefit sharing from human and non-human areas to explore synergies.
- Promote future policy developments by developing an “ethics health check” prerequisite for benefit sharing agreements involving vulnerable groups and communities in the context of human genetic resources.
Prof. Doris Schroeder
Prof. Doris Schroeder, Dr. Miltos Ladikas, Dr. Gardar Arnason, Julie Cook Lucas, Centre for Professional Ethics, University of Central Lancashire, Preston, UK, Principal Investigator.
Dr. Pamela Andanda, Law School, University of Witwatersrand, Johannesburg, South Africa, Member.
Mr. Roger Chennells, Legal Representative South African San Institute, Stellenbosch, South Africa, Sub-contractor.
Dr. Sachin Chaturvedi, Research and Information System for the Non-aligned and Other Developing Countries, India, Member.
Dr. Veronique Fournier, Assistance Publique-Hopitaux de Paris - Centre d’Ethique Clinic Cochin, France, Member.
Prof. Eugenijus Gefenas, Department of Medical History and Ethics, Vilnius University, Lithuania, Member.
Prof. Fatima Alvarez-Castillo, University of the Philippines, Manila, the Philippines, Member.
Professor Charles Wambebe, Chief Scientific Adviser, International Biomedical Research in Africa (IBRIA), associate member via South-African co-funding.
Prof Jack Beetson, Aboriginal Philosopher, Australia.
Prof. Alexander Capron, University Professor, Scott H. Bice Chair in Healthcare Law, Policy and Ethics, and Professor of Law and Medicine, University of Southern California. Former Director, Ethics, Trade, Human Rights and Health Law, World Health Organization
Dr. Dafna Feinholz, Chief of Bioethics Section, Division of Ethics of Science and Technology, UNESCO; Former Executive Director, National Bioethics Commission, Mexico City, Mexico.
Eugenia Marinova, World Bank, South Africa.
Prof. Michael Parker, Ethox, Oxford University, England.
Dr Giorgio Sirugo, Head, Medical Genetics Unit, San Pietro Hospital, Rome.
Funded by the European Community's Sixth Framework Programme under grant agreement 036691.
1 September 2006 - 28 February 2010.
Project output and publications
Definition of Benefit Sharing
University of Melbourne Event
International Conference on Access and Benefit Sharing for Genetic Resources, New Delhi, India, March 2008
Interview with Dr. Miltos Ladikas
Draft policy alternatives for benefit sharing involving human biological resources: Johannesburg Proceedings 2008
Cambridge Quarterly of Health Care Ethics, Volume 18, Number 2, April 2009 Special Section: Vulnerability Revisited
Hoodia Multi-Stakeholder Meeting Report, January 2009
Benefit Sharing, Pre- and Post-Study Obligations in Biomedical Research. Consultative Meeting Proceedings, Nairobi, Kenya, May 2009
Project Dissemination Conference, Montreal 6 November 2009, Agenda
Genbenefit case studies
Benefit sharing is an area of increasing international debate (for example within the World Health Organisation (WHO), World Trade Organisation (WTO), and World Intellectual Property Organisation (WIPO)). However to date the related ethical concerns have hardly been discussed.
Benefit sharing occurs mainly in two areas:
Human genetic banking; for the purpose of pharmacogenomics or population genomics research (using human genetic resources).
Use of traditional knowledge from indigenous communities; mainly by the pharmaceutical industry to develop new products (using non-human genetic resources).
Those working in the human area lack legally binding, international regulations such as the 1992 Convention on Biodiversity which are already in existence for benefit sharing regarding non-human genetic resources such as plants, animals and micro-organisms.
GenBenefit has created an international, interdisciplinary team with expertise in both human and non-human benefit sharing to explore synergies. The team are studying four paradigmatic international case studies (from South Africa, India, Iceland, and Kenya). A fifth case study from Nigeria has been incorporated into the project, funded by the South African Department of Science & Technology, which has granted co-investment funding to the University of the Witwatersrand’s (WITS) School of Law. This South African funding stream seeks out foreign projects that are likely to make an important contribution towards addressing national priorities on topics of strategic significance for the country.
The Southern African San traditionally used the Hoodia plant to stave off hunger during long hunting trips. The Centre for Scientific and Industrial Research (CSIR), South Africa, identified the active ingredient of the appetite-suppressant and filed for a patent to be used in anti-obesity drugs or foods. In 2003 the San people concluded a historic (and retrospective) benefit sharing agreement, which entitles them to a percentage of the royalties as well as milestone payments. In 2007 the San concluded a second benefit sharing agreement with Hoodia growers. As a result they will now receive a proportion of the sales revenue from cultivated hoodia.
The Kani people from Kerala, India, use a local variety of the Trichopus plant to reduce fatigue and increase well-being. In 1997 a benefit sharing agreement was made between the Kani people and the Tropical Botanic Garden and Research Institute (TBGRI), India, who filed for a patent, and granted a license to an Indian Ayurvedic company to manufacture ‘Jeevani’. A Trust has been set up to use the financial benefits to fund community development programmes for the Kani people.
Nairobi (Majengo Slum) Sex Workers
Approximately 5% of the 3,000 female sex workers in Nairobi seem to be resistant to HIV infection. Ongoing studies between a number of research partners are being conducted to elucidate potential mechanisms of HIV resistance using their blood and cervical samples.
Population of Iceland
In 2000 the Icelandic government gave deCODE genetics an exclusive licence to operate a Health Sector Database (HSD) linked to genealogical and genetic databases. deCODE agreed to pay the Icelandic government an annual fee and a share of profits. The HSD plans have since been abandoned. A collaboration agreement between deCODE and Roche promised that products resulting from the collaboration would be provided free of charge to the Icelandic people.
For information about the project, please contact: Julie Cook Lucas JMLucas@uclan.ac.uk