Data protection laws stalling medical research, say charities

Strict new laws around personal data protection have stalled vital medical research and prompted concerns that future trial participants might be put off, a group of charities has warned.

Requirements under the recently introduced European General Data Protection Regulations (GDPR) as well as new domestic research rules are now being applied retrospectively to ongoing studies, even in cases of frozen medical samples.

The Health Research Charities Ireland (HRCI) umbrella group, which represents organisation such as the Irish Cancer Society, Cystic Fibrosis Ireland and the Irish Heart Foundation, has said research is now "drawing to a halt".

At the launch of its 2019 position paper Research Towards a Healthier Ireland at its conference on Wednesday, the group set out a number of recommendations including a public awareness campaign aimed at communicating the vital role of research in the face of more rigorous personal data policies.

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"It's very much a stress at the moment," said HRCI chief executive Avril Kennan who explained those who took part in previous medical trials must now be contacted to re-establish consent on a more "stringent" level, a process that has the potential to cause distress in some historic cases.

“Most of the research community are very anxious about this,” she said, adding that “research is actually drawing to a halt”.

In cases where retrospective consent cannot be secured, medical samples must be disposed of. A special committee within the Health Research Board is examining how exemptions might be found in some cases.

Dr Kennan stressed there were pros and cons to the new regime – despite a slowing in research, patients are now being given more of a say in and understanding of how their data is being used.

“It’s really, really important that they do [participate in studies] but they may be turned off because suddenly there is all this focus on forms,” she said.

Consent procedures can typically take an hour which, while sounding like a relatively short amount of time, must be done in the case of each participant and guided by a professional, usually a research nurse for which there is limited funding.

Protection rules

The HRCI, in one of five pre-budget recommendations in its report, has said there is now a need for a public awareness campaign on the imperatives of research in the face of such data protection rules.

“Patients are now being asked to give more time and thought to the consent process, at an earlier stage in their care and at a time when the public is increasingly concerned about the misuse of their personal data,” it said. “This has the potential to reduce the number of patients participating in research studies.”

Its paper also calls for an Irish genome project to benefit healthcare innovation.

“Genomic research on all forms of human genetic disease, from cancer, to rare single-gene conditions like cystic fibrosis, to complex conditions with many causes like multiple sclerosis, is pointing the way to better and a more personal approach to medicine,” it says.

“Giving the right medicines to the right people, at the right time, will make the health service more cost effective.”

The document also states that Irish attitudes towards domestic research must shift from a “nice to have it” mentality to a more determined pursuit.

“In a health service beset by too few hospital beds, a lack of staff and recent high-profile crises, research is therefore always put on the back burner.”