Data protection legislation: interpretation and barriers to research
Year: 2000
Type: article
Abstract: Research has been described as "a powerful means of achieving" the objectives of the Department of Health, namely "to improve the health and well-being of the population and to secure high quality care." 1 There is, however, a need to find a balance between facilitating important research and protecting the confidentiality of patients.As the capabilities of information technology grow, legal frameworks and professional guidance need to be created or refined to safeguard the rights of patients.Some areas of the common law duty of confidentiality and the new Data Protection Act 1998, which constitutes the United Kingdom's implementation of the relevant European Union directive, 2 are causing difficulties of interpretation within the NHS.With few exceptions, broad debate about the implications of the new act is lacking, particularly in the context of epidemiological research that uses patients' records.3 Questions of consent, anonymisation of data for research, and access to medical notes for research purposes (rather than audit) have been addressed in a range of literature. 4 9-13 Some of these documents are being updated; this may indicate that there are uncertainties about the legal issues involved in implementing the act.Local variations in interpretation may cause particular difficulties for researchers conducting multicentre epidemiological studies, as the case study that will be described in this article shows. 1 Department of Health.Research and development: towards an evidence-base for health services, public health and social care.London: DoH, 1997. 2 Directive 95/46/EC of the European Parliament and of the Council of 24 October 1995 on the protection of individuals with regard to the processing of personal data and on the free movement of such data.Official Journal of the European Communities No L 1995 Nov 23;38
Source: BMJ
Author: J. Strobl
Institution: University of Liverpool
Language: English
Topic: Ethics in Clinical Research
Field: Medicine
Domain: Health Sciences
Open Access status: green
OpenAlex ID: W2036080985