Laws on Privacy Threaten to Curb Research into Breast Cancer; Scientists Denied Access to Patients' Details amid Confusion over Data Protection

Daily Post (Liverpool, England), January 28, 2003 | Go to article overview

Laws on Privacy Threaten to Curb Research into Breast Cancer; Scientists Denied Access to Patients' Details amid Confusion over Data Protection


Byline: Suzanne Elsworth and Laura Davis

WORLD class research into breast cancer has been put on hold because of changes in British law.

The ramifications of the changes could have far reaching consequences for all medical research, putting studies in the UK years behind the rest of the world.

A pioneering Liverpool study, which was launched by the late Professor John Sloane who was a world leader in breast cancer research, led to a major breakthrough which could have changed the lives of a large number of sufferers.

Three years ago Prof Sloane's team revealed they had discovered minute changes in women's breast cells which occur up to 15 years before the cancer develops.

The discovery could eventually allow the treatment of women long before their cancer develops, preventing them getting the disease.

Less than one month after announcing his breakthrough, Prof Sloane died in his laboratory at Liverpool University. His colleagues vowed to carry on the work in his memory, and were in the process of developing a genetic test which would identify which women could be successfully treated by hormone therapy.

However, the research has now ground to a halt after changes to data protection legislation mean the pathologists can no longer use patient information to further their research.

This is to protect patients' confidentiality, even though any details the researchers would need would not reveal the patients' identity.

Professor Chris Foster, director of pathology at Liverpool University medical school, last night said changes to the Data Protection Act had ``decimated'' the research.

He said: ``The manner in which the Data Protection Act has been interpreted does not allow access to patient records in order to validate the data. We were denied access to crucial information.

``Even though a patient's personal information was anonymous, those not in the research field did not want to give over any information that could assist our research.

``There are so many conflicting guidelines about data protection that people retreat into an entrenched position of defensiveness. We don't need to know their personal details, we just need to know the outcome of their diseases.''

The team developed a genetic test which identifies which women would respond to hormone treatment which could prevent them from ever developing breast cancer.

Without the medical records of the women tested in their trials, researchers are unable to check whether they identified the correct patients years earlier.

Prof Foster continued: ``The research team had identified new gene sequences that it knew from data would indicate which woman would and which would not respond to hormone treatment for their breast cancer.

``But now the research team are not able to move forwards with that. Patients want to know if they will be treated and if they will live.''

Prof Foster, who is also the European editor of the internationally renowned scientific publications Human Pathology and The American Journal of Clinical Pathology, explained the changes would have far-reaching implications for medical research in the UK.

They are also making UK-based research less attractive to pharmaceutical companies which help fund the work, he added.

He said: ``Those who do hold the information can also maintain their links with the companies who have the financial resources and data processing resources to be able to proceed. ``No university in this country can afford the type of data processing facilities that they have.

``It's a contradiction to be asked to lead world class research and then not be allowed the information required to carry it out.

``While we remain in this situation there can be no advances.

``You can identify a gene for the first time once, then it can't be identified for the first time again. …

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Laws on Privacy Threaten to Curb Research into Breast Cancer; Scientists Denied Access to Patients' Details amid Confusion over Data Protection
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