Knowledge, Perceptions and Willingness to Participate in Genomics Research in Kaberamaido District, Uganda

Abstract

Background The health needs of low-income countries are gaining increased attention among scientists and research funders. This is evidenced among other things by the growth of genomics research in Africa. The major ethical and practical challenge of the “genomic era” is ensuring that members of the general public have adequate knowledge to enable them make informed decisions on genomics. The current level of knowledge and perceptions about genomics and willingness to participate in genomics research in Africa is, however, unknown. This study sought to fill this knowledge gap. General objective Assessment of community’s knowledge and perceptions on genomics and willingness to participate in genomics research in Kaberamaido district in North Eastern Uganda. Methods A cross sectional study was conducted in Kaberamaido district between July and August 2018. Systematic sampling technique was used. Interviews were conducted using a guided semi structured questionnaire. SPSS (SPSS v20 (SPSS Inc.) software and thematic analysis were used for data analysis i.e. descriptive statistics were used to summarize the demographic factors of the study sample and the baseline measures of knowledge. The frequencies of genetic knowledge and perceptions and their association with sociodemographic and behavioral characteristics were assessed using Pearson Chi-square (χ2) tests. Binary logistic regression was used to analyse the factors that influence willingness to participate in genomics research. Thematic analysis was used to analyze the open ended questions. Results In total, 164 participants were recruited; 104 (63.4%) were male, the average age was 34(SD 14), 115 (70.1%) had attained at least secondary level of education, 79 (48.2%) were employed (formally and informally) and majority (n = 124, 75.6%) were catholic.Of the 164 participants, 112 (68%) had ever heard about genetics. A half to three quarters of the respondents selected the correct options for questions on knowledge on genomics. On perceptions of genomics, majority agreed that; they would have their genes tested for a disease with no known treatment (n = 109, 68.6%), would accept to test genes before marriage (n = 143, 88.3%), would like to bear children even if they had a defect in their genes (n = 105, 66.9%), would tell a spouse if they had a defect in their genes (n = 142, 88.2%).A majority (n = 141, 86%) were willing to participate in genomics research. Significant factors that influenced willingness to participate in genomics research included; tertiary level of education (p = 0.002, CI = 2.7-9.6), formal employment (p = 0.001, CI = 6.9-27.5), ever hearing about genetics (p = 0.001, CI = 2.2-9.3) and having ever participated in genomics studies (p = 0.021, CI = 1.7-8.3). Reasons given for willingness to participate in genomics research were; to know one’s gene status, to learn how to prevent genetically transmitted diseases, get treatment for genetic defects and diseases, to safeguard the future generations, to get knowledge on genomics and altruism. Reasons given for unwillingness to participate in genomic research included: Fear of stigma, lack of confidentiality, potential physical harm, lack of facilitation, sickness, lack of time, ignorance of genomic terminologies and the research not being personally relevant. Conclusion  A half to three quarters of the respondents had adequate knowledge on genomics. More than 2/3 of the participants expressed positive perceptions on genomics research.  A majority (n = 141, 86%) were willing to participate in genomics research.  Participants’ Willingness to participate in genomics research was determined by a variety of reasons and factors and outstanding among these was ability to acquire and understand information about genomics research, suggesting informed willingness to participate to participate in genomics research.