Research benefits for study participants and Communities

Ask prospective study participants or the general public whether one should be paid for participating in health research, the expectation from most of them is that  a yes, they indeed expect a payment or more benefits.  Most of them will justify their expectation lamenting that they set aside time for their participation and that need to be compensated. In other cases I have heard some participants saying that researchers benefit a lot from their participation, they get a lot of money and yet they request local people that for their voluntary participation. My work involves engaging communities where eligible participants reside. Using various channels of engagement one of the principles that is upheld is to give as much information as we can about a specific study that is starting in the targeted areas. Among so many questions that are filed during the engagement process one of them is centered on the issue of benefits; “what will our community benefit from the study” or what will the participants benefit in the study”.

On the part scholars, researchers and scientists the answer is not as straightforward as it seems. Mostly, the question has been whether paying people to participate in a study is ethical and just like any issue of ethics, there will always be different if not opposing schools of thoughts, one thing that is clear though is that the ethics of research do not allow or authorize giving more incentives to participants as this could eventually coerce or exploit people or communities to take part in the studies. As The Research Guidebook stipulates, "no persuasion or pressure of any kind should be put on participants."
http://www.ethicsguidebook.ac.uk/Are-you-paying-participants-or-using-lotteries-or-prize-draws-192. The report highlights that those for paying participants argue that it encourages responsiveness though it warns this 'Payment should not over-ride the principles of freely given and fully informed consent.'

And that’s another challenge since taking part in health research must be done on voluntary basis. There is no binding such that participants can withdraw their consent from a study whenever they feel they no longer want like to participate. By paying, you expect to get back services and this can never work in medical research. The participants are given freedom of choice.

Some argues however that small amount of money can be given as token of appreciation for the time the participants have rendered of which this is the practice in many studies that are currently conducted in many circles though the definition of an incentive would vary from one area to another, for instance, what is small in UK or South Africa can never be small in Malawi. In a country like Malawi where majority lives on less than a dollar a day, giving out ten-dollars as 'token of appreciation' can still be deemed as payment in spite of you stressing otherwise. It is therefore important to understand and consider a cultural and social context where a study is conducted.

But then with my experience in community engagement I still feel discontented with benefits given to participants in the studies and even in the communities where studies are conducted. I believe participants and communities still expect more than what they get, they expect direct benefits other than the answer which they are given that the studies will contribute the health policies of the country. Imagine studies are conducted in a specific catchment area for more than 5 years and the answer to their questions on benefits is just the same yet other developmental organizations in the same area are producing direct benefits and the communities are able to appreciate; how would they rate health research? Are they not going to give up and conclude researchers are there to use them? From a community engagement perspective, I feel its high time researchers started thinking of something like a social responsibility especially for studies that have a demarked recruitment area so that probably at the end of their recruitment they should contribute something in the area. Recently in some communities where we have been working for a long time now, there was a request for support to construct an under-five clinic for the surrounding villages. The request came while a study which is conducted in the villages is targeting under-fives and it still has a year ahead to wrap up recruitment. When the request came to my department it took us time to resolve it because it was such a huge dilemma we have ever faced, to date we have not come up with a final response to the community leaders who are patiently waiting. Several issues need to be considered before we draw a final conclusion and a ball is in our hands as a community engagement department, so this issue gave me a thought that as researchers we need to think of direct benefits for the communities that are involved in studies and at the same time try to balance with ethics of research.