RESUMO
Biobanks and human genomics applications are key for understanding health, disease and heredity in Africa and globally. Growing interest in these technologies calls for strengthening relevant legal, ethical and policy systems to address knowledge disparities and ensure protection of society, while supporting advancement of science. In Zimbabwe there is limited understanding of ethical, legal, and societal issues (ELSI) for biobanking and genomics. The Genomics Inheritance Law Ethics and Society (GILES) initiative was established in 2015 to explore the current status and gaps in the ethical and legal frameworks, knowledge among various stakeholders, and to establish capacity for addressing ELSI of biobanking and genomics as applied in biomedical and population research, and healthcare. A multi-methods approach was applied including document reviews, focus group discussions and in-depth interviews among health and research professionals, and community members in six provinces comprising urban, peri-urban and rural areas. Emerging findings indicates a need for updating guidelines and policies for addressing ELSI in biobanking and genomics research in Zimbabwe. Emerging terminologies such as biobanking and genomics lack clarity suggesting a need for increased awareness and educational tools for health professionals, research scientists and community members. Common concerns relating to consent processes, sample and data use and sharing, particularly where there is trans-national flow of biospecimens and data, call for nationally tailored ELSI frameworks aligned to regional and international initiatives. This paper describes the strategy undertaken for the development and implementation of the GILES project and discusses the importance of such an initiative for characterisation of ELSI of human biobanking and genomics in Zimbabwe and Africa. Conducting this explorative study among a wide range of stakeholders over a countrywide geographical regions, established one of the most comprehensive studies for ELSI of human biobanking and genomics in Africa.
RESUMO
Epilepsy is the most common condition reported through the psychiatric returns surveillance system in Gokwe South District. Review visits attendance is crucial to the successful control of seizures among epilepsy patients. We sought out to establish the attendance pattern of epileptic patients, prevalence of non-attendance and the associated factors. An analytic cross-sectional study was conducted where consenting respondents (N=110) were selected randomly from the district epilepsy register. Interviewer-administered questionnaires were used to collect data. Odds ratios were calculated to determine associations. Logistic regression analysis was done to identify independent risk factors and to control for confounding variables. A total of 110 epileptic patients were included in the study. The patients missed treatment review visits ranging from 1 to 11 of the expected 12 visits between June 2011 and June 2012. Most (70.9%) missed at least 2 visits in a 12month period while 46.4% missed 2 or more consecutive visits. Knowledge of treatment duration [prevalence odds ratio (POR) 0.24 (95% confidence interval (CI) 0.08-0.74)] and high risk perception [POR 0.14 (95% CI: 0.06-0.33)] were associated with a lower likelihood of missing review visits. Barriers such as shortage of drugs [POR 7.09 (95% CI: 3.00-16.72)] and long distances to health facilities [POR 6.63 (95% CI: 2.63-16.76)] were associated with high likelihood of missing two or more review visits consecutively. Shortage of drugs [adjusted odds ratio (AOR) 6.7336 (95% CI: 1.8538-24.4581)] and higher risk perception [AOR 0.1948 (95% CI: 0.0625-0.6071)] remained significant on logistic regression analysis. A high number of epileptic patients miss their review visits mainly owing to shortage of drugs, and long distances from health facilities.
