Ireland's 'rigid' approach to GDPR has negative impact on cancer trials, says report
Averil Power, CEO of the Irish Cancer Society, said: 'The solution is a national body that defines healthcare guidelines for all hospitals, and across the healthcare system.'
Ireland's restrictive interpretation of the EU's data protection laws is in “direct conflict” with the development of cancer research trials, according to a new study.
The report, released by Cancer Trials Ireland (CTI), shows that Ireland’s approach to the General Data Protection Regulation (GDPR) is overly restrictive and not in line with public opinion.
Over 3,500 industry-sponsored clinical trials began across Europe in the first six months of 2024, but only 11 trials included Ireland.
The study shows that Ireland’s interpretation of GDPR rules is having a detrimental impact on access to clinical trials, where patient data is shared with researchers and pharmaceutical companies.
Eibhlín Mulroe, chief executive of Cancer Trials Ireland, said while Ireland uses the same grounds for interpreting GDPR as other countries, “somehow, we are interpreting those grounds differently, and more rigidly”.
“We are third last in Europe on the median time it takes to initiate a trial in a hospital, after the clinical trial application is approved,” she said.
The research said 79% of Irish people agree it is important to utilise health information for research, with 74% of those willing to share their health information if they are told how it will be kept safe.
Almost 90% of respondents feel GDPR is important, with a further 48% insisting the government should simplify how it is applied, while removing some of the restrictions.
Averil Power, chief executive of the Irish Cancer Society, said the research shows Irish citizens are savvy about how their data should be used.
“The solution is a national body that defines healthcare guidelines for all hospitals, and across the healthcare system.
"This would remove the hospital-by-hospital, case-by-case system that delays trials opening and discourages clinical trials sponsors like pharma companies and collaborative groups from coming to Ireland,” she said.
