Human rights, privacy and medical research 01/06/06. By the Public Health Genetics Unit A report on human rights, privacy and medical research has recently been published by John Gillott and the Genetics Interest Group.

Human Rights, Privacy and Medical Research [PDF 344KB] is the first part of a study examining the impact of privacy rights on the regulation of medical research and clinical practice, with particular emphasis on the implications for human genetics. This first report is concerned with UK policy on tissue and data, and a second will examine the impact of privacy rights on human reproduction.

The report explores how human rights, particularly privacy rights comprised in the Human Rights Act 1998 and in relevant case law, impact upon research and clinical practice. Its starting point is the Human Tissue Act 2004 – the author demonstrates by textual study and legal analysis that the Government's promotion of patient-centred consent-based practice is sometimes inconsistent with promoting research and clinical practice that may be in the public interest.

The report goes on to analyse the philosophical basis for privacy-based arguments, (noting that this may impact upon the ideology of other regulators), and then compares recent legislative developments on tissue with the legislation regulating the processing of data.

In the context of data, the report concludes that there is a failure to balance the right to individual privacy on the one hand, and the public interest in research and the health needs of other individuals on the other, compounded by privacy-centric guidance from some regulatory bodies.

The report suggests that "the right to privacy is extensive, but also extensively qualified", and argues that the effect of recent judgements is to suggest that recent developments in tissue law and in the interpretation of data laws unduly emphasise the right to privacy. The report advocates a less privacy-centric treatment and one that reflects the courts' emphasis on a necessary and proportionate approach.

It concludes by challenging research and genetics communities to "make the case for the value of research and to explain the means as well as the ends of research to a wider audience", and urges them not to be cowed by government rhetoric suggesting that researchers are not to be trusted and that research "is an optional frill in evidence-based care". A report published today by the UK Evaluation Forum - Medical research: assessing the benefits to society [PDF 2.12MB] - has taken this forward by advocating a number of strategies for improving the knowledge and perception of medical research, including promoting an evidence base for demonstrating the impact of research and improved use of evaluation tools. In this respect, 'Human Rights, Privacy and Medical Research' adds textual and intellectual weight to the growing momentum for comprehensive reform initiated by the Academy of Medical Sciences earlier this year – see Personal data for public good: using health information in medical research [PDF 3.99MB].

Article courtesy of the Public Health Genetics Unit .