The Trovan Trial Case Study: After profits or
to save lives?
Available at: http://www.amanet-trust.org/discuss/viewtopic.php?t=11
Aceme Nyika
Ethics Coordinator
AFRICAN MALARIA NETWORK TRUST
Tanzania Commission for Science and Technology Building
P.O. Box 33207, Dar es Salaam, Tanzania
Tel: 255 (022) 2700018, Fax: 255 (022) 2700380
E-mail: anyika@amanet-trust.org
Outline of presentation
Nyumbani orphanage
 International Collaborative Research at
Nyumbani
 Controversy Breaks Out
 Researchers applied for Ethical Approval
in 2002
 Unpacking the ethical issues: Interactive
discussion

AMANET
www.amanet-trust.org
Kenyan AIDS Orphans at
Nyumbani





Nyumbani orphanage was opened in 1992 by
Father Angelo D’Agostino
The orphanage was registered as a limited
company under Kenyan law, Companies Act Cap
486
Aim to accommodate children orphaned by the
HIV/AIDS pandemic.
The AIDS orphans were drawn mainly from the
slums of Nairobi.
By the year 2000, was home to over 70 orphans.
AMANET
www.amanet-trust.org
International Collaborative Research at
Nyumbani
Some HIV positive orphans at Nyumbani
seemed to survive longer without any
medication than is generally the case with
HIV positive-children of the same age.
 Researchers started genetic studies on
orphans.
 Dr. Moses Otsyula (Institute of Primate
Research, Kenya) and Dr Sarah RowlandJones (University of Oxford, UK)

AMANET
www.amanet-trust.org
Controversy Breaks Out
In 2001 Dr. Moses Otsyula alleged that Dr.
Sarah Rowland-Jones’ team stole blood
samples from his lab when he was in the
USA to explore potential collaboration with
Harvard University
 He alleges that the team collected more
samples without ethical approval
 Papers based on the samples were
published

AMANET
www.amanet-trust.org
Controversy continued



Dr. Sarah Rowland-Jones claimed that the Oxford
team had been invited by Dr Moses Otsyula to
Kenya and that they had been led to believe by Dr.
Moses Otsyula that ethical approval for the study
had been granted
Dr. Sarah Rowland added that the Oxford team
had been given permission by Father Angelo
D’Agostino to conduct the research on the orphans
Father Angelo D’Agostino had allegedly said that
Nyumbani Home had all the necessary documents
authorising collection of blood samples from the
orphans and for conduct of the research.
AMANET
www.amanet-trust.org
Ethical approval in 2002




Researchers applied for Ethical Approval in 2002
The ethical approval was granted but not with
retroactive effect.
Kenya’s National Council for Science and
Technology, a government body that was
mandated with reviewing and approving research
in Kenya, initiated an investigation into the matter.
As the controversy was unfolding, a researcher
from Cambridge University, Dr. Eric Miller, visited
the Nyumbani orphanage to explore possibilities of
conducting collaborative research on the nutritional
benefits to HIV positive people of certain food
supplements.
AMANET
www.amanet-trust.org
VULNERABILITY
Were the children vulnerable?
RESEARCH ON
VULNERABLE GROUPS
Should research ever be conducted
on vulnerable groups?
EXTRA PROTECTION
How was the protection of the
orphans compromised?
Dr. Moses Otsyula’s
allegations
What are your views on the
allegations?
Dr. Sarah Rowland-Jones’
response
What are your views on her
response?