Study Initiation and Management: Information to participants

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Introduction

Under the terms of the Data Protection Act, 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 per the Research exemption - see Collection and storage of data for fuller explanation). The Information Commissioner’s Office provides a checklist for organisations handling requests for personal information (see 1st resource below).

The feeding back of individual research results to participants is covered in the MRC Ethics Series Using information about people in health research (Principles, 2nd resource below), and the MRC/Wellcome Trust Framework on the feedback of health-related findings in research (3rd resource below).

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.

Resources