Confidentiality of personal health information used for research

Researchers must balance the quest for better health for all against the need to respect the privacy of research participants, and what needs to be done to ensure best practice.

Abstract

Medical research has a long history in the United Kingdom and has generally enjoyed good public support. Researchers take confidentiality seriously and few breaches have been recorded. Concerns over research practices at Alder Hey hospital related to consent rather than confidentiality,1 but they tarnished the overall reputation of research. At much the same time, the Data Protection Act 1998 defined stricter criteria for handling personal data,2 supplementing the provisions in the UK common law of confidentiality. There is thus a legal and a moral impetus to ensure that research is conducted with the maximum respect for participants and their privacy, even if the research is not linked to clinical care. Many questions can be answered without the active participation of individuals, but researchers must strike a careful balance between their pursuit of health improvements for all and their obligation to maintain the privacy of individuals participating in research.