Medical research hampered by data protection fears

Out-Law News | 23 Jan 2006 | 5:09 pm | 1 min. read

Data protection concerns are leading UK health officials to refuse medical researchers access to records that could help them find the cure to diseases such as diabetes and cancer, according to a report published by the Academy of Medical Sciences last week.

The report suggests that a conservative approach to data protection has led health officials to require either that patients consent individually to the inclusion of their data in research, or that the data is ‘anonymised’ so that the individual cannot later be identified.

According to the report Personal data for public good: using health information in medical research, time and resources mean that researchers are often unable to obtain sufficient numbers of consenting patients to produce a worthwhile study.

In addition, where data is stripped of identifying information, this makes it impossible for researchers to then identify or contact patients who may be willing to participate in medical trials.

The report argues that the ‘consent or anonymise’ approach is not strictly necessary under the current law, which is largely governed by the Data Protection Act of 1998.

In general terms, says the report, the Act allows the use of medical data without consent, so long as the use of the data is necessary and proportionate – bearing in mind privacy concerns and the public interest. Research without consent should therefore be permitted, provided that these safeguards are met.

The report then calls for the development of a scheme that will allow for the assessment of proposals using such data, and guidance on when approval will be granted. Good practice guidance for researchers, setting out how best they can comply with the data protection requirements, is also recommended, together with research into how the public really feels about the use of personal data in medical studies.

Responding to the report, Information Commissioner Richard Thomas wrote to The Times this week, saying the Data Protection Act is not to blame.

"The central issue here is patient confidentiality," he wrote. "Since the days of Hippocrates, medical records that identify patients have been protected by the doctor’s duty of confidentiality. Patients do not expect our doctors to pass on their medical details to others without their knowledge or consent, even to medical researchers."

He continued: "Most medical research uses anonymised information. Where named records are essential, my office stands ready to help researchers to find solutions, which do exist. It is not normally a problem for patients to be informed about the use of records for research, and for concerns to be taken into account. The law also recognises that consent is not required in every situation."