Study Initiation and Management: Information to participants

Introduction

Under the terms of the Data Protection Act 1998, individuals have a right to see information that is held about them. However you are not legally obliged to supply the information if it is used for research, as described in the Information Commissioner’s Office checklist for organisations handling access requests (question 8 of the 1st resource below).

The feeding back of individual research results to participants is addressed in the MRC Ethics Series Personal Information in Medical Research (2nd resource below) and Human Tissue and Biological Samples for use in research (3rd resource below). The 3rd resource covers some specifics, e.g. how to handle incidental clinical findings, and issues related to genetic research.

Ethics committees should review all arrangements for feedback of research information to participants.

For more information on dissemination of general research findings to participants and the general public, please visit Dissemination activities.