A court case that involved police gaining access to confidential medical records threatens to undermine a £20m national database to study the role of genes in disease, senior government advisers have been told.
Medical scientists and legal scholars believe that existing laws allowing the police and the courts to confiscate records relating to a person's DNA will jeopardise a pioneering re-search project due next year.
The Human Genetics Commission, the Government's own watchdog on DNA research, said it was deeply concerned at the implications of the court case, in which supposedly private records of a medical project were used by police despite protests from scientists.
The case concerned Stephen Kelly, 33, who was found guilty in February at the High Court in Glasgow of culpable and reckless behaviour by having unprotected sex knowing that he was risking the life of his girlfriend, Anne Craig, 34, who has three children and who subsequently developed Aids.
The privacy implications of the case could wreck attempts to persuade people to participate in a national database on genes and lifestyle, scientists said.
The database will hold personal details and DNA samples on at least 500,000 people, to be established over the next few years in a project organised by the Medical Research Council, the Department of Health and the Wellcome Trust the world's biggest medical research charity.
Scientists believe that the information gathered for the UK Population Biomedical Collection will help to elucidate the genetic and environmental factors involved in common illnesses, such as Alzheimer's disease, asthma, cancer, diabetes and heart disease. However, there are growing fears that promises of confidentiality given to the volunteers who contribute to the database will be worthless in the aftermath of the Kelly case. Sandy McCall-Smith, vice- chairman of the Human Genetics Commission and professor of medical law at Glasgow University, said the case has raised fresh concern about promises of confidentiality givento patients.
"We believe it's very important that people who participate in medical research should be absolutely assured of confidentiality and any undertaking or promise on confidentiality are kept," Professor McCall-Smith said. "It may be that we need to tighten up on confidentiality in this respect and we'll be reporting to the Government later this year. We are concerned about this case and concerned about the issues is raises."
Professor Andrew Leigh Brown, director of the Centre for HIV Research at Edinburgh University, said the case appalled him because it exposed the vulnerability of supposedly confidential data gathered as part of a research project.
Kelly and Craig had both taken part in a study of HIV transmission between 1993 and 1995 involving Professor Leigh Brown, who is now a visiting professor at the University of California at San Diego. The blood samples and personal information obtained were coded so that only the doctor directly responsible for the patient knew their identity. The codes were used by non-clinical scientists involved in the study.
During their investigation, the police obtained the codes from patient medical records and used them to seize the scientific evidence that established the genetic similarity between the Aids viruses infecting the two individuals.
Professor Leigh Brown believes there are wider implications. Every blood sample taken for medical research carries a genetic signature of the person donating it. The UK Population Biomedical Collection will be a vast store of genetically identifiable data.
He said: "Seizure of such information will provide a detailed genetic signature of an individual and could be used as forensic evidence. These databases will have an important role to play in developing our understanding of human genetic variation and disease, but what will protect them from seizure by legal authorities? I have been in the US for nine months and here there would be legal challenges mounted to prevent access, but we're not geared up for that in the UK."
Professor Tom Meade, who chairs the expert working group looking into the gene bank project, said it had always been accepted that the police could gain access to medical records in circumstances involving serious crime. However, he believes that the case in Scotland was extremely rare.
The public was more interested in the invasion of its medical records by insurance companies or mortgage firms rather than the police, Professor Meade said. "We can give undertakings of confidentiality in this respect," he added.
Sue Mayer, from the pressure group GeneWatch UK, said the gene bank should be protected by stronger privacy safeguards, perhaps involving an independent agency established by an act of Parliament.Reuse content