Trust me – I'm a researcher
A research project exploring the issue of trust in research will face a slightly ironic challenge from the outset – how to convince other researchers to trust the ‘trust research’ investigators.
This Catch 22 situation hints at the complexities ahead for the investigating team behind ‘Trust me – I’m a researcher: The role of trust in human research enterprise’. The three-year project by the Centre for Health and Society got underway in 2010, funded by an ARC Discovery Project grant of $250,000.
The topic’s multi-linked layers and many potential avenues of exploration might partly explain why such an important area has been so under researched, both within Australia and overseas, says one of its co-investigators, Associate Professor Lynn Gillam. She believes the project could be a world first and have significant potential impacts on the practice and policies of research, nationally and internationally.
In analysing trust and trustworthiness in human research, the project will particularly focus on the meaning and role of trust between researchers and research participants. The Centre’s Director, Associate Professor Marilys Guillemin, Professor Doreen Rosenthal and Mr Paul Stewart are co-investigators.
Unlike informed consent, a core component in ethics research that has been well defined, trust is much less tangible, Associate Professor Gillam says. It varies according to the perspective of the researcher or research participant concerned, and may change according to the context and over time. “On some understandings of trust, it’s really an emotion rather than a considered judgement,” she says, “and that emotion might be really difficult to shift. Even though people may have had bad experiences they may continue to trust.“
The relationship between trust and informed consent illustrates one of the many potential benefits of the project. In a previous ARC-funded study into human ethics research, the investigators had discovered it was fairly common for a research participant to decline the full information that was offered by the researcher in the process of obtaining a participant’s informed consent; the participant preferred to trust the researcher. From an ethical standpoint, this made researchers uncomfortable, Associate Professor Gillam says. “The researchers feel it puts all the responsibility back in their hands and the participants are saying ‘yes’ without really knowing what they are getting into.
“One of the specific things that could come out of this is a set of guidelines about how to manage that particular situation,” she says. “We could improve our understanding of what informed consent is about and how to do it well if we recognise that it’s happening within this context of trust. At the moment it’s pretty context free – that’s one of the difficulties.”
The importance of context in understanding trust will be highlighted by case studies drawn from two areas: indigenous research and research involving vulnerable participants, such as young or elderly people.
But the investigators first must overcome that initial hurdle. “We have to find researchers who are willing to trust us and make themselves a bit vulnerable because we’re going to speak to their research participants . . . There will be lots of negotiation ahead.”
Caption: Associate Professor Lynn Gillam