Realizing Benefit Sharing: Is There a Role for Ethics Review? - Benefit Sharing - page 173

Chapter 8
Realizing Benefit Sharing: Is There a Role
for Ethics Review?

Doris Schroeder, Eugenijus Gefenas, Roger Chennells, Veronique Fournier,
Dafna Feinholz and Giorgio Sirugo

Abstract The donors of human genetic resources deserve benefits in return for their
contribution to scientific research. In the context of developing countries this claim
holds as a matter of justice. But how can this demand be realised and implemented?
This chapter looks at the role of ethics review as a possible benefit sharing mecha-
nism. In particular the promising role of research ethics committees in monitor-
ing the Declaration of Helsinki's post-study obligations is considered. However, a
range of obstacles are identified, which would have to be overcome before ethics
review could reliably achieve justice for the donors of human genetic resources in
developing countries. These issues are addressed in specific recommendations. The

A shorter version of this chapter was published in 2012 by Doris Schroeder and Eugenijus
Gefenas as: Realising benefit sharing: The case of post-study obligations, Bioethics , 26(6).

D. Schroeder ( * )
UCLAN, Centre for Professional Ethics, Brook 317, Preston PR1 2HE, UK
e-mail: [e-mail]
E. Gefenas
Department of Medical History and Ethics, Medical Faculty of Vilnius University, M. K.
Č iurlionio str. 21/27, LT-03101 Vilnius, Lithuania

e-mail: [e-mail]
R. Chennells
Chennells Albertyn: Attorneys, Notaries and Conveyancers, 44 Alexander Street,
Stellenbosch, South Africa
e-mail: [e-mail]
V. Fournier
Centre d'éthique Clinique, Hôpital Cochin, 27 rue du Fbg Saint Jacques, 75014 Paris, France
e-mail: [e-mail]
D. Feinholz
Bioethics Section, Social and Human Sciences Sector, UNESCO, 1, rue Miollis, 75732 Paris
15, France
e-mail: [e-mail]
G. Sirugo
Centro di Ricerca, Ospedale San Pietro Fatebenefratelli, Via Cassia 600, 00189 Rome, Italy
e-mail: [e-mail]