Abstract
BackgroundMisunderstandings of the role of genetics in disease development are associated with stigmatizing behaviors and fatalistic attitudes about prevention. This report describes an evaluation of community understanding of an educational module about genetic and environmental influences on the development of podoconiosis, a neglected tropical disease endemic in highland Ethiopia.MethodsA qualitative process assessment was conducted as part of a large prospective intervention trial in August 2013, in Wolaita Zone, southern Ethiopia. Sixty five participants were purposively selected from 600 households randomized to receive the inherited susceptibility module. The educational module used pictorial representations and oral explanations of the interaction of inherited sensitivity and soil exposure and was delivered by lay health educators in participants' homes. Data were collected using semi-structured individual interviews (IDIs) or focus group discussions (FGDs).ResultsQualitative analyses showed that most participants improved their understanding of inherited soil sensitivity and susceptibility to podoconiosis. Participants linked their new understanding to decreased stigma-related attitudes. The module also corrected misconceptions that the condition was contagious, again diminishing stigmatizing attitudes. Lastly, these improvements in understanding increased the perceived value of foot protection.ConclusionsTaken together, these improvements support the acceptability, feasibility and potential benefits of implementing gene-environment education in low and middle income countries.
Highlights
By all accounts genetic discovery and technology development have been progressing at an ever-quickening pace.[1]
Leaders around the world have raised concerns that these trends may mean that health benefits arising from genetic discovery will not reach, or perhaps even be relevant for, the low and middle income countries (LMICs) that could stand to benefit most.[2,3,4]
WHO’s Human Genetics Programme has outlined a number of goals aimed to offset such disparity, including the need to, ‘build public understanding of the science of human genetics and genomics, related technologies and health services; and their ethical, legal and social implications’
Summary
By all accounts genetic discovery and technology development have been progressing at an ever-quickening pace.[1] Leaders around the world have raised concerns that these trends may mean that health benefits arising from genetic discovery will not reach, or perhaps even be relevant for, the low and middle income countries (LMICs) that could stand to benefit most.[2,3,4] WHO’s Human Genetics Programme has outlined a number of goals aimed to offset such disparity, including the need to, ‘build public understanding of the science of human genetics and genomics, related technologies and health services; and their ethical, legal and social implications’.5. Misunderstandings of the role of genetics in disease development are associated with stigmatizing behaviors and fatalistic attitudes about prevention. This report describes an evaluation of community understanding of an educational module about genetic and environmental influences on the development of podoconiosis, a neglected tropical disease endemic in highland Ethiopia
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