Data protection, informed consent, and research

Medical research suffers because of pointless obstacles

Cancer Research UK and other medical research charities have warned the government that the human tissue bill will cause damaging confusion among doctors and hamper medical research unless crucial sections are clarified.1 The Data Protection Act, another well intentioned but loosely drafted law, has also been in the news. The Bichard inquiry has been investigating the decision by Humber-side police to erase the records of Ian Huntley's sexual offences involving children because he had not been convicted, and Richard Thomas, who as information commissioner is responsible for interpreting the Data Protection Act, has announced a public information campaign to prevent such embarrassing “misinterpretations” of the act.2 He says that “data protection principles are largely a matter of common sense,” and told the Bichard inquiry that the decision to erase Huntley's records was “astonishing.” This decision, like the General Medical Council's instruction to doctors that they might face litigation under the Data Protection Act if they notified their patients to cancer registries without obtaining fully informed consent, stemmed from the legal muddle that the Data Protection Act has engendered. To blame the muddled majority is to miss the point. It is the law, not police or medical training, that must be amended. Access to personal records should not require informed consent in certain circumstances, and these should be specifically exempted. The criterion of an overriding public interest has proved to be too ambiguous to be useful.

The deaths that will occur because of the effects …