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Human Rights, Privacy and Medical Research; analysing UK policy on tissue and data
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 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.