Róisín Shortall (Dublin North West, Social Democrats) | Oireachtas source

I have given the Minister notice of my intention to raise an urgent and serious matter with him today. It concerns the brain tumour research study proposed by Beaumont Hospital and Genomics Medicine Ireland, a commercial company that intends to use the DNA from brain tissue samples obtained from tumour patients. Research in this area is critically important but it should be carried out under the auspices of a State body, which ensures appropriate regulation, transparency and public buy-in with a specific public benefit remit. Ireland is an outlier in not taking such an approach. It is proposed that these samples would be used to create large DNA databases to which access will be sold for commercial purposes. This project raises huge ethical, privacy and public interest issues. The proposal was comprehensively rejected by the Health Research Consent Declaration Committee, the body charged with making decisions on these key issues.

However, a subsequent appeal of this decision was, puzzlingly and worryingly, upheld. The handling of this issue by the State has been questionable, to say the least. Under the proposal, GMI is not required to obtain consent from patients or the families of the deceased. Instead, against all best practice, an opt-out arrangement was agreed with a limited requirement for newspaper advertising and a deadline of tomorrow, 12 June. As the Minister is aware, that period has coincided with Covid-19 and because of that public awareness of this significant proposal is very limited. Therefore, given all of the concerns and big question marks around the probity, data protection and ethical aspects of this proposal, I am making an urgent appeal to the Minister here today to extend tomorrow's deadline for patients and their families to opt out in order to ensure adequate public awareness. I hope the Minister will accede to this request.

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