When the Data Protection Act 1998 came into force in spring 2001, there was much debate about what this meant for the use of medical records in research. Medical standards committees were revising their confidentiality guidance and debate was heating up on Section 60 of the Health and Social Care Act.
To explore these issues, The Nuffield Trust held a series of workshops with Dr William Lowrance, who in 1997 had prepared an influential report, Privacy and Health Research, for the US Secretary of Health and Human Services, to explore the issues that are the subject of this report, such as consent, the handling of identifiability, societal versus individual interests, genetic data and materials, and database stewardship.
In this agenda-setting report, Dr Lowrance describes the importance of the issue, reviews the background, mentions many examples of research and privacy protection, identifies problems, and suggests ways forward. This report is required reading for anyone concerned with the ethics of research and access to health databases.
Lowrance W (2002) Learning from experience: privacy and the secondary use of data in health research. Research report. Nuffield Trust.