Survivors 'infantilised' by records being withheld 

Mother and baby home survivors have been told health records will not be passed onto them directly but to a nominated GP or other doctor who will decide whether it is appropriate to pass them on

Mother and baby home survivors have been told health records will not be passed onto them directly but to a nominated GP or other doctor who will decide whether it is appropriate to pass on. File picture: Larry Cummins

Mother and baby home survivors say they are being "infantilised" and "demeaned" by the refusal to provide them with their full personal records.

Children's Minister Roderic O'Gorman has raised concerns about the continued redaction of records and is seeking the advice of the Data Protection Commissioner.

When the Mother and Baby Home Commission wound up this year, records were transferred to the Department of Children and survivors have the right to apply for information contained about them in these files under GDPR.

However, those who have made subject access requests (SARs) have been told health records will not be passed onto them directly and instead they must nominate a GP or other doctor who will receive this personal information and decide whether it is appropriate to pass on.

Mari Steed, who was born in Bessborough said: "It's infantilising and demeaning, again it's that presumption that we're so damaged that we're incapable of handling that kind of information.

"I mean, yes, there may be some people that could be upset by that, but to make that assumption that we are all in that same boat is ridiculous," she said.

Vaccine trials

Ms Steed, who was part of the vaccine trials carried out at the home, said the information she got back from the department was incomplete.

"Obviously there's withheld materials that are health related, now that could be anything. I mean, I suspect, given all the redacted blank pages that were in that final data, it has to do with the vaccine trials, and possibly some other paper files," she said.

Solicitor Simon McGarr represents another survivor who has also had information withheld. He is contesting the reasons provided for redacting, withholding, or partially withholding documents from survivors.

"It doesn't meet the requirements for necessity and proportionality under the GDPR. So there is one area where it's acknowledged that you would not release information directly to a person and might release it to their doctor. The only time I've ever seen this convention used is where people are suffering from mental illness," said Mr McGarr.

Children's Minister Roderic O'Gorman has raised concerns about the continued redaction of records and is seeking the advice of the Data Protection Commissioner. File picture: Niall Carson/PA Wire

A spokesperson for the Department of Children said the policy is to release as much information as legally possible from the commission’s archives, consistent with the approach required under the GDPR.

"Where there is 'health' data, the department is required by the regulations to engage in a consultation procedure with the requestor’s health practitioner before supplying them with any of this data.

"The statutory instrument does not enable the department to exercise discretion in this work and requires consultation with an appropriate health practitioner in all cases," the spokesperson said, adding that once the person's medical practitioner has reviewed the personal data and has determined that it can be released, the department will release the personal data in question to the requestor.

"Minister O'Gorman has expressed concern about the requirement in the 1989 regulations.

"He and the minister for justice are giving consideration, as a priority, to the regulatory requirement to consult with a health practitioner in all cases before supplying health data. The minister’s officials have also consulted with the Data Protection Commission on the issue."