Sir John Savill exposes the moral bankruptcy of those UK research funders who object to proposed European legislation on personal data (“Data privacy change could be a bitter pill”, News, 13 February). The cost of automation to seek informed consent for each study is a drop in the ocean compared with what is spent on medical research equipment in genomics and other areas.
The primary issue is not privacy but rather others’ use of a human being for whatever purpose. Who are the funders to override ethical imperatives? Why is an agency of an elected government so set on stealing from the personal lives of its citizens? International standards of research have required participants in medical research to be recruited via their GPs. The admirable vision of the UK leading in long-term scientific research into healthcare is at dire risk from outdated information management and, perhaps, fears of being found out.
University of Birmingham