Geneticists must win public trust to succeed

January 18, 2002

Britain's research biologists want to find out how life works and they want to defeat deadly diseases. But as the House of Lords heard this week in a debate and select committee hearing, these aims do not guarantee public support. Instead, essential (and legal) experiments involving animals can proceed only after bureaucratic delay that disadvantages the United Kingdom by comparison with other countries. And plans for databases of genetic information on humans are waylaid by worries about privacy and consent. Researchers claim that the Home Office has too few people to approve animal experiments quickly. But their solution of a local approvals procedure risks cosiness. It should be backed up by national assurance mechanisms.

By contrast, genetic data is a new problem that we have a chance to get right. The key is that participants in Biobank and other data collections should give informed consent (what this amounts to is unclear) and that any action that links a named individual to data or samples must be externally approved case by case. Lower standards risk public distrust - and the animal researchers can tell geneticists where that leads.

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