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Paper long abstract:

This paper reflects on some of the ethical challenges posed by working across disciplinary boundaries, especially with non-academic partners, in field settings where health and research governance might be very different from our own. The main questions I raise here is, how do we draw moral boundaries around our relationship with partners in the field, beyond the formal contractual norms? In particular, often our inadvertent observations of their work or a particular aspect of their practice itself is a focus of a difficult ethical engagement. How do we decide whether and when to intervene and when to maintain normative silence? The paper draws on field notes and dilemmas raised in working closely with a community organisation (AD) in India, whilst trying to understand and engage with their commitment and support for a state sponsored community genetics programme for sickle cell disease. Some of these dilemmas are more easily resolved by refocusing on the context or the social milieu within which such public health interventions and the work of non-governmental organisations (mediating between the state, healthcare system and the local communities) are located. Some practices, however, not only seem incomprehensible but also unsafe. I conclude with some thoughts on the possible modes of intervention, when faced with such practices, and the limits of what might be considered normative silence as an ethical choice on local part of fieldwork confronted with unsafe practice or a controversial policy intervention, what is a normative silence and interventions in our relationship with partners that one considers ethical? The paper whilst negotiating and working closely with community/non-governmental organisations responsible for implementing what are arguably quite controversial health policies implemented by the state (for instance, genetic screening of children in schools)?