Over the past few years, there has been considerable debate over the regulations and guidelines required for the governance of genomic projects and biobanks. Consent from research participants is mandatory and it is now widely accepted that there should be some form of public engagement to ensure public trust and to give the research endeavor legitimacy. Although involvement of participants has been regarded as important, the ways in which involvement has been implemented in the research process has varied enormously depending upon different factors. More recently, patient groups and direct-to-consumer testing companies have developed new forms of participant-centric approaches, by using information technology that places the individual in control and at the centre of activities.
This conference will show case some new initiatives advancing a participant-centric approach and provide a forum for critical discussion and appraisal.
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