Genomics and Benefit Sharing with Developing Countries – From Biodiversity to Human Genomics

GenBenefit banner

Genbenefit is a Specific Targeted Research Project with a total budget of 548,639 Euro.

View the Project Brochure (.pdf 538KB)

Project Aims

  • 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.

Project Lead

Prof. Doris Schroeder

Project Staff

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.

External Advisors

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.

GenBenefit group

Back row from left

Doris Schroeder, Veronique Fournier, Fatima Castillo, Miltos Ladikas, Eugenijus Gefenas.

Middle row

Sachin Chaturvedi, Julie Lucas, Gardar Arnason.

Front row

Pamela Andanda, Roger Chennells.

GenBenefit group

From left to right

Eugenijus Gefenas
Roger Chennells
Fatima Castillo
Sachin Chaturvedi
Pamela Andanda
Julie Lucas
Veronique Fournier
Doris Schroeder
Gardar Arnason
Miltos Ladikas.

Definition of Benefit Sharing (.pdf 184KB)

University of Melbourne Event (.pdf 125KB) 

Vulnerability Proceedings (.pdf 310KB)

International Conference on Access and Benefit Sharing for Genetic Resources, New Delhi, India, March 2008 - Agenda (.pdf 82KB) | News Release (.pdf 76KB)

Interview with Dr. Miltos Ladikas (.pdf 95KB)

Draft policy alternatives for benefit sharing involving human biological resources: Johannesburg Proceedings 2008 (.pdf 197KB)

Cambridge Quarterly of Health Care Ethics, Volume 18, Number 2, April 2009 | Contents (.pdf 136KB) | Special Section: Vulnerability Revisited (.pdf 33KB)
For copies of papers or for more information please contact Guest Editor/Project Leader or Project Manager

Hoodia Multi-Stakeholder Meeting Report, January 2009 (.pdf 776KB)

Benefit Sharing, Pre- and Post-Study Obligations in Biomedical Research. Consultative Meeting Proceedings, Nairobi, Kenya, May 2009 (.pdf 332KB)

Project Dissemination Conference, Montreal 6 November 2009, Agenda (.pdf 40KB)

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.

San People

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.

View case study (.pdf 406KB)

Kani People

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.

View case study (.pdf 359KB)

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.

View case study (.pdf 201KB)

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.

View case study (.pdf 126KB)


The case will focus on NICOSAN (formally NIPRISAN), developed from a plant recipe by Rev P.O. Ogunyale. The recipe had been used for the management of sickle cell anaemia by his family for many generations. A Memorandum of Understanding (MOU) was developed for collaboration between Rev. P.O. Ogunyale and the National Institute for Pharmaceutical Research and Development (NIPRD). Subsequently, the MOU was adopted by WIPO (Geneva) and the World Health Organization Regional Office for Africa (Brazzaville). The issues of interest for GenBenefit in this case include the MOU, patents, benefit sharing and publications.

View case study (.pdf 125KB)


Lessons Learned (.pdf 183KB)

Further Information

For information about the project, please contact: Julie Cook Lucas, Centre for Professional Ethics, Brook Building, University of Central Lancashire, Preston, PR1 2HE, UK (email:

The views expressed in this website are the sole responsibility of the author and do not necessarily reflect the views of the European Commission.