Conducting large community studies in low-resource regions researchers encounter workers at trial sites with an array of languages, cultures, literacy levels and educational backgrounds. Consequently, tailoring ethics training can be time-consuming and difficult to standardise.
To improve the situation researchers at John Hopkins University, Maryland, US have created a field training guide and discussed its development in PLoS (Public Library of Science) Medicine.
In the journal article the researchers identify two innovative aspects of the guide. Firstly, it identifies the distinct role of data collector. Individuals in this position: obtain informed consent; or collect data from human subjects through a variety of means.
Performing these tasks the data collector must act respectfully to each study participant and safeguard the integrity and confidentiality of the data.
Secondly, the guide presents the primary responsibilities of data collectors in terms trainers can convey to workers in the field. For instance, the guide includes instruction on behaviours that promote ethical principals, such as regarding body language when seeking informed consent.
Furthermore, the guide emphasises the importance of correct, accurate data recording and transmission. As part of this it covers the cultural challenge of encouraging data collectors to admit mistakes and ask questions when anything is unclear.
The guide has been translated into French, Mandarin and Thai. Translations into Bangla and Nepali are in progress. The guide’s creators hope other researchers will translate the document into other languages, as well as adapting it and identifying potential improvements.
Alternatives
Creation of the guide was prompted by perceived shortcomings available training tools have in low-resource environments. For instance, online training materials from the National Institutes of Health (NIH) are too complex and cumbersome in settings with limited internet access.
Also, some training programmes require institutional affiliations or annual fees and translation into local languages can be a burden. Free programmes, such as Family Health International’s guide, are available but are considered too comprehensive to be applied effectively in the field.
In response the researchers set out to create a pared-down guide covering the fundamentals of protecting human subjects, with a focus on topics such as respectfully and diligently obtaining consent.