The Risk Management Practices of Health Research Ethics Committees May Undermine Citizen Science to Address Basic Human Rights

Abstract

Abstract Lack of supportive workplaces may be depriving babies and mothers of the health advantages of breastfeeding. This citizen science pilot project set out to engage women in photographing and sharing information on the available facilities for breastfeeding and expressing and storing breastmilk in Australian workplaces. While some useful insights were gained, the project failed in the sense that 234 people ‘liked’ the project Facebook page set up to recruit participants, but only nine photographs were submitted. The heaviest loss of participation occurred after the ethics committee requirements were explained, in particular, the requirement for employer consent to take a photograph, or alternatively, for a participant to agree to bear the risk of taking a photo without permission. The ethics committee also made stipulations about the formality of language to be used. Thus, the project’s potential role as an enabler for health action was neutered. We argue that the ethics requirements worked contrary to our purpose and possibly acted to reinforce the powerlessness some women experience at work.