Question: what have you discovered since you started your reasearches?

Dorcas Kamuya answered on 26 Sep 2014:

@223heaa32,
There are various outcomes of carrying out research. The widely know outcome is making discoveries, which can be of many forms.One of those forms is furthering a theory of knowledge or developing a theory of why things happen the way they do, or challenging an existing theory and providing evidence for an alternative.

The kind of research I conduct is focused on the practical application of ethical principles in the conduct of health research involving human subjects (participants). All research that involves humans is very highly regulated to make sure that it is relevant (answering an important health question) and that the rights of those recruited in research (participants) are respected. This means that the researchers explain to participants what the research is about, the participants understand this and then make informed decision of whether or not to participate (consent process). There are numerous international ethical guidelines that outline how research should be conducted.

But, on the ground, things can be very complex, and sometimes it is not always clear or even easy to know what to do; and sometimes guidelines are not very helpful. So this is the area that I am interested in, an area I have been working on for a while, looking at how well these guidelines work in practice in resource poor settings. From the research I conducted, for example, I realized that

a) participants are always negotiating for more benefits (more health care, higher fare refunds etc) while researchers are worried that if they increase these benefits they may not have enough funds to complete the research, and it may lead to undue inducement for participants to join research. This is problematic because people will be joining research without knowing what they are signing up for. In addition it may interfere with household dynamics (if one child is provided with health care and another is not). The current guidelines are unclear on how benefits should be negotiated.

b) Another phenomenon I discovered is called “silent refusals’ – where participants agree to participate in research, but keep dodging follow-up visits and often have what might seem like authentic reasons, while all the time accessing the full benefits of the research. I was interested to then find out the factors contributing to silent refusals, and its implication on informed consent processes.

These and other ethical dilemmas contributed in formulating on-going support systems research staff. In addition, we are building an evidence base to make an argument for review of the international ethics guidelines. So there are many interpretations of discoveries, and one of these is the new knowledge that research can contribute to.

Dorcas