update: Active participation26 June 2007 |
People are positive about participating in research and sharing personal data, newly published research has revealed, if effective systems are in place to ensure informed consent and anonymity.
From clinical trials to cohort studies, people are an essential part of biomedical research. To find out more about public attitudes to research governance, the Wellcome Trust commissioned a qualitative project, based on a series of in-depth discussion sessions ('Public Attitudes to Research Governance: A qualitative study in a deliberative context').
Although awareness of regulatory systems was low, all were in principle supportive of research on people, with participants signing up for altruistic reasons and not because they expected to benefit themselves.
There was a general willingness to provide personal data, provided that it was clear why it was needed and that there was confidence in the systems in place to maintain confidentiality.
Informed consent was also seen as crucial, with little support for 'implied consent' systems. It was also recognised that a 'one-size-fits-all' consent process would be problematic, as people would vary considerably in their preferences, and the type of research and data involved would affect attitudes. A suite of consent options would be one possible approach.
In terms of recruitment contacts, GPs were seen as well-trusted, though their active involvement would be difficult given their workloads. GPs' receptionists, however, were not thought to be suitable alternatives because of the fear of loss of confidentiality.
Overall, the specifics of informed consent systems and data confidentiality were seen as more important than regulatory structures or bodies, which were seen as too remote or abstract.
Despite widespread interest, and a desire to be better informed, the study groups felt they knew little about current practice. A website for people keen to find out more or volunteer for research studies might help.