Even when we try to get the rules of engagement right, we can get it wrong. What are the guiding principles around the ethics of engagement? Whose responsibility is this? In the first parallel session on Thursday morning, these issues were explored in an experimental role play chaired by Wellcome Trust’s Bella Starling.
Seven members of the audience were selected to pose as a research ethics committee considering public engagement activities into a previously approved proposal on a new medical intervention to induce abortion. The proposed public engagement activity was in two phases: firstly, a discussion through a national radio debate about sexual health research, particularly with regard to abortion and when it might need to be carried out with voting on the issue, followed by phase two, where the research results would be disseminated through intermediaries in the local community where the research took place, and through radio.
The audience was divided into teams with specific roles which included a research scientist, local clinician, social scientist, community chief, policy voice, community representative, public engagement practitioner. A representative from each team then participated in a role-play debate. It emerged from the debate that different stakeholders come from particular paradigms in terms of ethics and public engagement. Public engagement is not ethically neutral, the group found.
Questions which arose included: whose responsibility is it to do public engagement? When should public engagement be reviewed? Who sits on the ethics committee, and is the chair neutral? When do public engagement plans become explicit? What happens when there are several studies? Should communities develop shared principles? Who is going to monitor the ethics during the public engagement?
It emerged during discussion that when public engagement occurs, it should be based on an informed public engagement strategy. There are a range of public engagement issues, some of which are more controversial than others, like abortion which has a scientific component, but is not integrally involved in science. Perhaps one way to deal with deciding on controversy in public engagement is to decide on the role of science in the controversy, and then assign roles.
Some words kept being repeated: one was time – when should public engagement take place? – and the time available to the people doing the research. Protection of people was another, as well as review and competence to do public engagement.
The group was asked whether it thought having guidelines underlying public engagement would be useful – the show of hands was nearly unanimous. A guiding framework might be helpful which is not too prescriptive, and is flexible enough for country-specific contexts. It was suggested that the blog would be a valuable platform to continue this debate. Please visit https://scienceincommunity.wordpress.com
after the workshop to comment or see more about this issue!
Posted by Greer van Zyl, Healthwrite