Should you give the data out?
– No, I should not give out individual data with personal identifiers. That would break privacy and confidentiality, even if the research has potential public health benefits.
How do you not violate any of the General Principles of Informatics Ethics?
– I will follow the individual privacy and security, least Intrusive, and ensure transparency of all processes.
If you want to provide the data to them, what and how will you do it?
– I should provide data at village or sub-district level, instead of identifiable individual records. If individual-level data is absolutely required, I will seek approval from the ethics committee and/or responsible authority. A data-sharing agreement is also required to define how the data will be used, stored, and protected. After that, I would share only the data relevant to their research, after de-identifying any personal identifiers.
