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23/07/2014

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Scientific trials and community engagement

Anthony James teases out a way forward

I am asked constantly whether or not it is really necessary to do community engagement. Furthermore, I have heard that community engagement is just a masquerade for public relations. After my recent experience with mosquitoes, here are my reflections.

Mosquito trials

Last November, an announcement by a British-owned private company and its collaborators that they had conducted open-release trials of genetically-modified mosquitoes in the Cayman Islands and Malaysia stirred up much debate in the public press and research community. The mosquitoes carry genes designed to suppress the target population, in this case, members of the species Aedes aegypti. These are responsible for transmitting dengue fever in many subtropical and tropical environs, and are associated historically with yellow fever epidemics. Modified mosquitoes are proposed as supplements or alternatives to insecticides or land-management practices, both of which are potentially harmful to the environment and anyway do not work all that well in controlling dengue fever.

As yet, the industry has no common standards in place to guide public and private development of these technologies.  However, it is important for the public to know that the scientists involved are energetically helping to draw up standards so that the technologies will be applied and regulated safely, efficiently and ethically1.

Defining the community

Consent to field trials is not only a matter for the designated governmental authorities in the countries in which they take place. If the technologies are going to be accepted as public health tools, it is essential that the larger community participates, discusses and ultimately authorises their use. It is difficult to define and identify those who have a legitimate stake in the trials, but my colleagues and I adopted a working definition that the community consists at a minimum of those individuals ‘who share identified risks associated with the proposed research project2. We recognised that the community is not a pre-existing and established structure, but forms as a result of the project. 

Community engagement activities are essential. These identify all who must be made aware of the proposed trials, and we argue that the community must also be able to provide input. These activities should be initiated early in the project to avoid pressuring communities to make quick, and perhaps unsound, decisions based solely on meeting timelines. A stepwise approach is valuable, with specific decision points for moving ahead to help provide ample time and opportunity for evaluation.

Vital issues

The purpose and goals of the research must be made clear to allow the community to decide whether its support and participation are needed. Trust is vital in any such project, and as in all human ventures, it takes time to develop but can be lost quickly.  Communities must trust that their interests are not treated as less important than the new technology.

We need to balance the promotion of potentially valuable health practices with community prejudices. This is a significant challenge. There also is much debate about whether community- and regional-level studies should be subject to informed consent in the same way as individual participants in research. It helps to choose research sites where there are already mechanisms for obtaining the community’s authorisation.

Community engagement is a complex social phenomenon. As such, all activities must be reviewed and evaluated constantly during the project, and modified if necessary.

Engagement and PR

If we really believe that genetically-modified mosquitoes will help alleviate disease (and we do), why put at risk their future adoption by not engaging those for whom they were designed?  Scientists are accused constantly of communicating poorly with the public. What starts out as community engagement and a search for the ‘right thing’ to do may end as good public relations after all.

 


1 WHO/TDR (2010) Progress and prospects for the use of genetically-modified mosquitoes to inhibit disease transmission. Report on planning meeting 1: Technical consultation on current status and planning for future development of genetically-modified mosquitoes for malaria and dengue control. WHO/TDR publications ISBN: 978 92 4 159923 8 DOI: 10.2471/TDR.10.978-924-1599238.

2 Lavery et al., (2010) Trends in Parasitology 26, 279-283.

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Dr Anthony A. James
Dr Anthony A. James is Distinguished Professor in the Department of Microbiology & Molecular Genetics at the University of California, Irvine
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