Human Rights, Privacy and Medical Research; Analysing UK Policy on Tissue and Data

Gillott, John (2006). Human Rights, Privacy and Medical Research; Analysing UK Policy on Tissue and Data. Genetic Interest Group, London.

URL: http://www.gig.org.uk/docs/hrprivacypdf190506.pdf

Abstract

This report is one outcome of a study into privacy and human genetics initiated by John Gillott and staff and trustees of the Genetic Interest Group.

The initial focus was on genetics and human rights, with an emphasis on legal aspects and policy decisions informed by law and rights ideology. Article 8 of the Human Rights Act 1998, the right to respect for private and family life,1 is of most relevance to this study, though other Articles are considered.

The study as a whole comprises two broad strands of inquiry, reflecting those areas in which privacy rights are most relevant and have had the greatest impact: the effect of law and ideology on research and clinical practice, with a focus on genetics; and human reproduction, again with a particular focus on genetic aspects. These two areas present contrasting analytical challenges. While there is recent law indirectly or directly relevant to research and clinical practice (notably the Human Tissue Act 2004), there is little or no case law on the subject. In contrast, as regards reproduction and genetics, there have, over the past five years or so, been a number of court decisions, at all levels up to the House of Lords and the European Court of Human Rights. We therefore decided to publish the results of our study into the two areas separately, the better to highlight the key issues in each subject area. This report is on the first strand: the right to privacy in the context of medical research using tissue and data.

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