Róisín Shortall, TD and co-leader of the Social Democrats, has spoken out against this Friday’s (12 June 2020) deadline for patients and family members of deceased patients to opt out of a study which will collect tissue from decades of brain surgery. She is calling on the Minister for Health to extend the opt-out deadline and require a more public campaign to inform affected persons and families of their rights.
Deputy Shortall commented, “The study, conducted by Beaumont Hospital and Genomics Medicine Ireland (GMI), will collect brain tumour tissue from surgeries between 1987 and 2018. This data will be held by GMI, which will decide on future access for research or commercial use.
“Serious concerns have been raised previously about GMI, which is a private company. Freedom of Information requests last year showed that Health Department officials expressed concerns to the Minister about how GMI misrepresented its private interests. The company has also been the subject of examination by the Data Protection Commissioner.
“The data is intended to be sold for profit to pharmaceutical companies, with the HSE only getting access to it years later. Why would data from Irish patients not be made immediately freely and publicly available to the Irish health service? Will this information later be transmitted outside of the EU, where data protection laws are much weaker? We still don’t have these answers.
“This Friday’s deadline was announced 90 days ago, just as the Covid-19 crisis was kicking off. It raises serious concerns about the legitimacy of the public notice period and how adequately the study and the opt-out clause have been advertised to the public.
“These are real families whose genetic data will be held by a private company and sold for profit, and they deserve adequate notice of their right to maintain their own privacy and the privacy of their deceased loved ones.
“In the interest of the public, the Minister needs to step in to extend the deadline and require a more public campaign to inform families of their rights.”
10th June 2020