The Medical Council “will be closely monitoring developments” surrounding the recent RTÉ Investigates programme on the Department of Health soliciting sensitive information about children with autism and their families – some of which was received from doctors without consent.
The children were involved in now dormant legal proceedings against the State regarding their educational and medical needs. The ongoing compilation of a ‘dossier’ on families was disclosed in the public interest by a Department civil servant, Mr Shane Corr, who had previously raised the matter through a protected disclosure.
The Council informed the Medical Independent (MI) it “will be in contact with the Department of Health and the HSE”, but declined to comment on its consequent actions. The ethical guide “sets out the ethical and professional conduct requirements for doctors”, noted its spokesperson.
“The Council are aware that a multidisciplinary team is being formed to consider the issues raised in the Prime Time broadcast. We are also aware that the Data Protection Commissioner has now commenced a statutory inquiry… in relation to some of the issues raised.”
Ms Margaret Fox Lennon, a founding member of DCA Warriors, which advocates for children with additional needs and serious medical conditions, said families were extremely concerned their private medical information may have been shared without consent. “It is a huge betrayal,” she told MI.
Ms Fox Lennon, who was involved in litigation on behalf of her son in the early 2000s, was aware of some families connected to DCA Warriors who had been informed by RTÉ they were on the Department database. At press time, there was no State process to inform families whether they were affected by this issue. Speaking to MI on 31 March, Ms Fox Lennon called for the immediate release to families of a senior counsel report into the practice, which was commissioned by the Department last year.
She said families expected the Medical Council to investigate this matter. “There are no words I can find to express my gratitude to Shane Corr,” she added.
The Department said it had never “unlawfully” held sensitive information on children involved in dormant court cases.
Subsequently, the Department has appointed Mr Donie O’Shea as an “Independent Support Liaison Officer” to engage directly with “the families involved in recent allegations on the RTÉ Prime Time programme regarding the collection of data for litigation purposes”.
According to an open letter to “stakeholders” by Mr Robert Watt, Secretary General of the Department, it is committed to publishing the Independent Expert Review by an external senior counsel.
“Due to legal implications, including protocols around publishing a protected disclosure and the Department’s desire to protect the rights of the discloser, the Department is continuing to engage with legal counsel and aims to publish the report next week,” wrote Mr Watt on 1 April.
He reiterated that the Department “has never gathered sensitive medical and educational information on children involved in court cases in the manner portrayed in recent media reports”.