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Level of consent in Social Networking research

social network informed consent research ethics

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Hayley Robinson

Posts: 3


I have a question regarding the level of consent required for a WhatsApp study with patients enrolled in a health service (NHS).

I will be conducting a feasibility cluster randomised trial, whereby clusters (programmes) will be randomly allocated to the intervention or control group (usual care). I will be providing patients in the intervention group with a phone with WhatsApp and my initial thought was that I would need patient level consent for them to be involved in a study including social networking/or for them to at least provide some sort of declaration stating that they understand WhatsApp. However, I wonder whether this is necessary. For example, whether it would be possible to just gain consent from the lead of the programme (e.g. for them act as patient guardian)?

Thank you


Brenda Curtis

Posts: 1

I'm in the United States and the regulations may be different in other locations. I would obtain consent from the individuals you plan to conduct research on. Several issues point to the need to obtain informed consent:
1) You are randominzing people into conditions and conducting an experiment. You need consent to conduct research.
2) You are asking people to use a service (WhatsApp) and providing them with a phone.
-- I would strongly advise you to inform people of what WhatsApp is, the type of data it (as a app) collects, and the risks associated with them using the app. For example, does the app collect location information? Are their post private? What if they post something illegal on the app? What are their threats of privacy for using this app? Will using this app identify them as being in this study (i.e., are you creating a study group on the app and placing people in that group)?

3) Are you collecting data off the app? If so, how are you going to do that and will that violate WhatsApp terms of service? Could this impact participants if they agree to the terms of service but by being part of the study they could be violating them. (This might not apply to your study as I'm not sure what you are doing in the intervention and if you are collecting data from the app).

Hope this helps.