Closing notes on ethical dilemmas

In carrying out this review, the research team has identified a number of ethical dilemmas that need to be considered in developing research strategies for this particular group. These generally relate to the issue of ‘mainstreaming’ (encouraging minority groups to participate fully in existing services) versus what we might call ‘separate development’. There is a general presumption in the planning of welfare that all groups will wish to participate equally in whatever society has to offer. The issue is how this can be achieved without compromising the autonomy either of the group as a whole or of individuals within it. In the case of Travellers these issues are very complex.   

The frequently expressed desire of many Traveller communities to remain ‘outside’ society is not merely an understandable response to discrimination. Rather it is an important element in how they define their own identity. They are socially excluded but they also exclude themselves. Hence policies designed to meet their needs by ‘mainstreaming’ them into existing services are liable to be met with resistance - even when they are prepared with sensitivity. This raises the question of what the needs and rights of such a group actually are.  Separate services may be the only appropriate option but this may increase their isolation still further.   

To make matters even more complicated, it is also necessary to consider the rights of sub-groups and individuals within the Traveller community. What are the duties of the wider society towards those who may be denied rights because of the cultural context in which they are living? The high levels of illiteracy among young people in Traveller communities is a case in point here. Lack of education is a serious constraint on any individual’s ability to realise their potential. How far is it the responsibility of the rest of society to ensure that the needs of Traveller boys and girls are effectively met even when this comes into conflict with the values of their cultural group?  

At the same time we need to ask: what are the duties of the Travellers themselves? It is increasingly accepted that in the context of citizenship, rights can only be understood alongside corresponding duties. These duties or social responsibilities are clearly problematic in settings where some members of the group involved wish to remain separate. Of course the desire for ‘separateness’ will vary between individuals and will depend in part on the sensitivity with which they are approached. However, important questions remain about how the duties of Travellers themselves towards the rest of society are to be defined, especially when the perceived needs of the two groups may often appear to be in conflict.   

These concerns are of obvious relevance in the context of service delivery but they are also central to the ethical conduct of research. The most important question relates to the moral status of research itself.  Should we be trying to carry out research in situations where the subjects are reluctant participants? These ethical dilemmas underlie much health work but have particular significance in the case of Travellers. Is it possible to reconcile the desire of Travellers to have a degree of separation from the rest of society with the collection of health data for wider social use? How much effort should researchers put into undertaking needs assessments if their efforts are not seen as appropriate or welcome? Can health promotion research and interventions be justified if the subjects of these activities are ambivalent or resistant to them? These questions will need careful consideration and resolution if an appropriate knowledge base is to be developed for improving the health of Travellers.