What are the ethical considerations for using patient data for research in South Sudan?
I am planning a research study that will use routine health data from DHIS2 and patient records. What are the ethical considerations I need to be aware of, particularly in the South Sudan context where formal ethics review processes may be limited?
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Even in settings with limited formal ethics infrastructure, the core ethical principles apply: respect for persons (informed consent or appropriate waiver), beneficence (the research should benefit the population), non-maleficence (minimise risks to participants), and justice (fair distribution of benefits and burdens). For research using routine health data, you should seek approval from the Ministry of Health and, where available, a national or institutional ethics committee.
Data anonymisation is critical when using patient data for research. Remove all direct identifiers (name, date of birth, address) and consider whether indirect identifiers (age, sex, location) could be used to re-identify individuals in a small population. SSHIA can provide guidance on data anonymisation best practices.
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