Uganda Bioethics Expert on Obama Global Inquiry

14 March, 2011, Esther Nakkazi

With his expertise in science, policy and ethical values in research, Ecuru and the panel will find out if volunteers in medical research sponsored by the US in developing countries are protected from harm and unethical behavior

Julius Ecuru, 37 years old, is the assistant Executive Secretary at the Uganda National Council for Science and Technology (UNCST).

Last week, Ecuru was named a member of the International Research Panel for US President Barack Obama’s Bioethics Commission.

He has been involved in research and ethics for the last 13 years and has played a major role in developing Uganda’s guidelines for research involving humans as research participants.[frax09alpha]

He will investigate the effectiveness of the current US rules and International standards for the protection of human participants in scientific studies.

Obama called for the investigations after the discovery last year, that the US, more than 60 years ago had deliberately infected Guatemalan prisoners with sexually transmitted diseases for a medical study.

With his expertise in science, policy and ethical values in research, Ecuru and the panel will find out if volunteers in medical research sponsored by the US in developing countries are protected from harm and unethical behavior.

He spoke with journalist Esther Nakkazi. Below are the excerpts;

Q: Do you think the International Research Panel you are part of will unearth any serious unethical behavior on human participants by US researchers in Africa and elsewhere?
I think it will be a revelation that in the past, research on human participants was unethical. But now there are international rules and standards, which cannot be breached.
President Obama also wants to be assured that these rules and standards protect the people involved in research. If the panel finds any gaps then we shall report back to the commission.
By examining the current norms we get to understand their adequacy in protecting research participants.

Q: What is the history of research in Africa? Was it experimentation on human beings?
It is not vey clear if Africa had human participants abuses in research like the case of Guatemala cited by President Obama and up to what magnitude. Most of the documented abuses happened outside Africa.

I think the interest of the colonialists was different. They wanted to understand tropical diseases, improve cash crops production etc so they did not involve humans.
We do not know much. So this is an area I would encourage that some investigations be done in Africa.

Q: If it was done do you think it was ethical?
We have not had unethical behavior. But that is because research ethics is quite new in Africa we still do not know what was done back then. There were no clear frameworks of how human participants could be handled in research.
For instance in Uganda, research involving humans as research participants started only about 20 years ago when we started the first HIV vaccine trials. That was in 1997.

Q: How ethical is research done in Africa today?
Protection of people during research is universal, but countries should also have their standards. For instance, Uganda has its own rules and regulations for protecting humans as research participants.
What countries do should be consistent with international standards and should be adequate. But you find that some African countries do not have their own standards. They rely on International standards but there are so many differences in culture, practice etc. The local rules are equally important, they should not be inferior and should exist.

Q: If you could give us a sense of how many studies are carried out in Uganda, which involves human participants?
Uganda has 400 new studies every year and cumulatively 300,000 Ugandans participate in research every year. Of the studies done about 60-70 percent involve human participants, (medical research) and 5 percent of the studies are clinical trials.
This therefore underscores the need for an ethical research so that they protect the rights and welfare of individual research participants.

Q: But sometimes it may not be unethical at the level of the individual but the human biological samples like blood or tissue that are taken away by international researchers. How do you control that?
We now have a strict policy. A researcher can only take human samples when they demonstrate that we do not have the capacity to manage them.
We have a materials transfer agreement under the 2007 ‘National Guidelines for Research involving Humans as research participants’. Besides other things this binds the institution here in Uganda and the one that receives the human samples.

We demand to know that they tell us where, what and why they are going to use the samples for. We also emphasize that should benefits arise both institutions benefit and the samples are used responsibly.

Q: How do you monitor that?
We may not be able to monitor them but we get updates and progress reports over a given period of time. We also forge a collaboration to continue in the follow up activities.
Through this we collaborate in studies, benefit from transfer of technology and exchange of information. This is what Africa should do.

Q: Are there penalties for unethical behavior?
We can cancel your license but we prefer to avoid it altogether so we have strengthened our guidelines and we are educating the public and creating awareness.
This will change the behavior of the public and assure them that research is done in responsibly and ethically.

Q: Why is bioethics increasingly becoming important?
It is important to avoid cases of injustice like the Guatemala case in 1946-1948. We recognize that these are injustices of the past that is why it is important to guard against them.
Also, the rapid advances in science especially in bio sciences, which has a lot of potential today greater than 50 years ago. This enables us manipulate organisms, work with living organisms and it raises a lot of ethical issues.
Bioethics helps us ensure that as science progresses and technology advances,  we do not violate and compromise the rights of people who participate and those who consume the products.
Future economic growth of countries will depend on the level of science and technology applied. So it should be in the context of bioethics so that people’s rights and welfare are not violated.

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