'Anonymous' research data used in prosecution

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The Independent Online

The case of Stephen Kelly, who was found guilty in February 2001 of culpable and reckless behaviour, exemplifies the way the police and courts can access medical details collected as part of a research project.

Kelly, who was HIV positive, was sentenced to five years at Glasgow High Court for having unprotected sex knowing he was risking the life of his girlfriend, Anne Craig, a mother of three who later developed Aids.

Kelly and Craig had been in a study of HIV transmission between 1993 and 1995, run by Professor Andrew Leigh Brown, then of Edinburgh University and now at the University of California in San Diego.

The experimental protocol "anonymised" the personal details similarly to how the UK Biobank intends to deal with personal information. Under the protocol, every volunteer was given a patient number, and their actual name and identifying details were stored separately within a secure computer.

Researchers studying a biomedical databank can normally just access patient numbers, rather than names. But it is still possible to trace all information to a named individual if someone has access to the code.

During the investigation of Kelly, police obtained the anonymised codes from patient medical records and used them to seize the scientific evidence that established the genetic similarity between the Aids viruses Kelly and his girlfriend had.

Using this medical research data, the prosecution could show that Kelly had passed on the virus to his girlfriend at a time when he knew he was HIV-positive.

Professor Leigh Brown was angry at the information being used. "These databases will have an important role to play in developing our understanding of genetic variation and disease, but what will protect them from seizure by legal authorities?"

Steve Connor


¿ Over the next five years, 500,000 men and women aged between 45 and 69 will be recruited into the study.

¿ The health and well-being of each person will be followed closely for between 10 and 30 years, or until that person dies.

¿ The Department of Health, the Medical Research Council and the Wellcome Trust have earmarked £45m for the study, with another £16m promised from other sources. Some commentators suggest the final cost over the entire length of the research programme could top £500m.

¿ The Genetics White Paper launched in June recommends a ban on the police and the courts testing someone's DNA without that person's consent.

¿ The biobank will be housed within Manchester University and will co-ordinate six other regional centres throughout Britain.