Mother and baby home survivors demand vaccine trial records

Mari Steed: 'The State has a duty of care to inform its citizens of information it may hold with regard to our medical health, full stop.' Picture: Arthur Carron/Collins

The Department of Children is not proactively informing hundreds of mother and baby home survivors that they were part of controversial vaccine trials as children – despite being required to under EU law.

The final report of the Mother and Baby Homes Commission identified seven vaccine trials carried out in six of the institutions the commission investigated.

All were carried out by the Wellcome Foundation or Glaxo Laboratories – which are now part of pharma giant GlaxoSmithKline (GSK) and involved at least 223 children who were included without the consent of their mothers.

Unaware

However, almost all are unaware they were used in vaccine trials as children, as they have never been informed of this fact by either GSK or the religious order.

All of the records relating to the trials are now with the Department of Children. The Irish Examiner asked the department if it had a duty to inform people they were part of a vaccine trial, where it has that information.

It said such a process would give rise to "significant implications, including legal implications''.

"In particular, it would require a clear legal basis for accessing the archive for this purpose which would have to be provided for in primary legislation,” it said a statement.

The department pointed out that "everyone has the right to access their own personal data and can make a subject access request (SAR) to the department in respect of their own personal information". 

They "would receive information on their involvement with vaccines trials where that is in the archive in relation to them".

Legal obligation

However, specialist in information law Fred Logue of FP Logue Solicitors said that, in these particular circumstances, the department has a legal obligation to individually inform those whose personal data is contained in the archive about it, including a description of the categories of information it holds.

"This view that the department can't access the archive without bringing forward legislation is simply not correct. Under Article 14 of GDPR, the department is under a legal obligation to individually inform people within one month of receiving the archive that their data is held and the categories of information concerned. 

"Under data protection law, the best interests of the data subject is the primary guide to what you should do in any particular situation.

Do people who were included in medical trials without their consent have a right to be told this fact if the State has that information? I would say absolutely. 

"It's not enough for the department to just invite people to make subject access requests. It must pro-actively inform people that it holds this information, it is obliged to by EU law" he said.

State's failure

Mari Steed, one of few people who has had her participation in a mother and baby home vaccine trial confirmed by GSK, hit out at the State's failure to proactively inform every person who was part of a vaccine trial where it has access to such information.

It is appalling to me that the State feels no obligation to inform those who may not be aware that they, too, were participants. 

"There was little to no follow-up done on trial participants and none in my case. There is no evidence to support the commission's findings that there 'is no evidence of injury to the children involved as a result of the vaccines'."

"There was personal injury simply based on the fact that we were injected with experimental vaccines without our or our mothers’ voluntary consent. And the State cannot assume there were no long-lasting ill effects or injury when there was no follow-up process. 

"The State has a duty of care to inform its citizens of information it may hold with regard to our medical health, full stop," she said.