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Q&A with Aceme Nyika, ethics coordinator of AMANET (the African Malaria Network Trust)

4 Nov 2009

Source: TropIKA

Dr Aceme Nyika

Dr Aceme Nyika, ethics coordinator of AMANET (the African Malaria Network Trust) is helping drive efforts to build capacity in health research ethics across Africa.

Q: Have major global ethics initiatives had any real effect on African bioethics?

A: Yes, the main benefit has been funding towards training. However, there is a lot need to be done because ethical review is a continuous process, not an event. So if you get funding for only 2 years, whatever progress is made might be reversed.

Q: Should African countries rely on international guidelines or develop their own?

A: International guidelines work as a point of reference because the basic principles are the same. But we need to adopt them to local circumstances. African countries are not very homogenous in terms of cultural customs, for example. There may need to be procedural differences between rural and urban areas as well.

Q: Is there where the expertise of ethics review members is most useful?

A: It is, but there’s a requirement for ethics review boards to have lay members to act as community representatives. Scientific experts may be detached from the realities on the ground, perhaps because they live in urban areas.

Q: What bottlenecks did the AMANET survey find?

A: The major one was the lack of basic resources such as office space. Many respondents had no desks, no phones, no filing cabinets – the basic things many of us take for granted. This is not necessarily because those resources don’t exist, but more because the member’s institution does not prioritise ethics review so they won’t allocate them resources. Not one of the respondents had any access to electronic data management systems, so they had to sift through paperwork each time they were asked to review something.

It’s important to highlight this because investigators don’t always know what happens behind the scene – I was a researcher myself and I used to get frustrated when I filed a protocol and had to wait 2-3 months or more to get a response.

We also found that members lacked training, especially in terms of standard operating procedures. This lack of training meant they didn’t pick up ethical issues when the trial proposal was submitted, and these issues would only crop up in the field. This shows that the issues were missed during the review process.

Q: What is AMANET doing to improve ethics review across Africa

A: We are offering small grants to enable ethics committees to set up offices and have a base of operation. We are also giving secretariat members a small allowance to supplement their income, since they often work long hours trying to meet their ethics responsibilities. Some grants go towards reviewing and developing their standard operating procedures.

Another focus is training, and we train up individuals who then go and train other individuals. We run workshops for investigators to ensure that they really understand scientific procedures, in terms of how a trial should be designed, and which methodology to use.

We’ve set up web-based courses that have proven to be very popular with people who cannot travel to the workshops. Some universities now want these courses to be accredited to that their students can use them. This is important because it is helping to train the next generation of African scientists.

We have also set up an electronic discussion forum of topical and challenging ethics issues in Africa. Researchers and ethics committee members post real case studies that they have encountered, and ask the forum to comment. It is Africa-wide, but we also get responses from researchers outside the continent.

Q: What else are you focusing on?

A: We want to bring together various players in health research such as regulatory commissions, investigators and ethics committee members. There is a lot of overlap there that means individuals can share experiences and resources. For example, an oncologist working on a regulatory committee could offer some ethics expertise or advice. This is not just something that AMANET needs to do – all the stakeholders really need to work together on this.

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