Latest news with #DataProtectionAct2018
Irish Examiner
5 days ago
- Health
- Irish Examiner
Families criticise delays to inquiry into epilepsy drug valproate
Families have criticised inordinate delays to the opening of an inquiry into the prescribing of valproate to pregnant women for epilepsy. Families affected by the prescribing of sodium valproate, which can cause serious birth defects and development disorders, were told last year that the inquiry would begin "within weeks" but there is now no timeline of it starting. The Department of Health has blamed the delays on data protection issues, but Ciara McPhillips, solicitor for the patients' advocacy group OACS Ireland, said: 'It seems incredible that it is taking so long. In October 2023, when the Department of Health was seeking to appoint a chairperson they advised OACS in writing that they were already working on the necessary data protection framework. 'And yet here we are 20 months later and 12 months on from the appointment of a chair and the inquiry has not commenced because of data regulations.' Ms McPhillips, partner with Micheal Boylan LLP, said signing off on data regulations is the responsibility of the health minister. 'We now understand, on foot of recent parliamentary questions, and a direct email from the minister, the regulations are with an arm of the Attorney General's office and that they are being worked on,' she said. Sinn Féin TD Rose Conway Walsh will now raise the delay in the Dáil. 'I absolutely share the frustrations,' she said. 'There is no explanation whatsoever for why it should take this long. It is really just putting the parents through more excruciating anxiety and pain, and these parents have suffered enough already.' Debbie Adams, whose two daughters, aged 13 and 11, live with Fetal Valproate Syndrome said: 'I've no faith in the system. 'This should not have happened. This has changed the trajectory of our family's life.' A department spokeswoman said regulations under the Data Protection Act 2018 are required to give a robust legal basis to the inquiry, including for data protection. The statutory instruments are being drafted 'as a priority', she said. 'When these have been finalised, it is anticipated that the public facing elements of the inquiry will commence shortly thereafter,' she said.
RTÉ News
30-05-2025
- Health
- RTÉ News
Calls for inquiry into prescribing of anti-epilepsy drug to begin
The Minister for Health has been urged to commence a long-awaited inquiry into the historical prescribing of an anti-epilepsy drug to pregnant women without delay. Families affected by sodium valproate, which can cause serious birth defects and development disorders, were told last year that the inquiry would begin 'within weeks'. However, despite a chairperson being appointed last June, the inquiry has yet to start. Karen Keely, from the Organisation for Anticonvulsant Syndromes Ireland, has said she is "dumbfounded and absolutely shocked" over the delay. All of Ms Keely's three sons - 38-year-old Harry, Lee who is 29, and 26-year-old Lorcan - have been impacted and require round-the-clock care. Speaking from her home in Ratoath, Co Meath, she said she has been fighting for an inquiry for almost a decade and thought it would be halfway through by now. "I'm gutted... there's no words for how I feel, because you know you're living with a guilt knowing what you know, and you're still fighting for something," she said. According to the Department of Health, prior to the formal commencement of the inquiry, "it is necessary to have in place regulations made under the Data Protection Act 2018". This, it said, is necessary to ensure that the inquiry has a "robust legal basis" and to support its data protection obligations. However, Ms Keely said the delay is unacceptable. "The only thing that's holding up in this inquiry is the data regulations. And it does not take a year to put data regulations in place. It doesn't take a year," she said. "I hope that the data regulations are put in place as soon as possible. I hope the inquiry is started, like yesterday. It needs to start. The Irish voices literally need to be heard. They're the only voices that have not been heard." The Department has previously stated that the non-statutory inquiry will document the evolution of sodium valproate regulation, the practices and controls in relation to its prescribing, and the timeline of developments in scientific knowledge about the potential impact of the drug on foetal development. It's also said that sodium valproate is an effective medication and continues to be an essential part of treatment plans and that patients shouldn't make changes to their treatment without first consulting their doctor. However, it is estimated over 1,000 children have been impacted since the 1970s, with the most recent cases dating to the 2010s. Solicitor Ciara McPhillips represents many of the families and said it is been an incredibly upsetting time for them. "We understand the reason for that is that data protection regulations, which are obviously important to the inquiry, which will deal with personal data, have not been finalise. Families are very frustrated and feel that last year was a false dawn." She said the timeline set out by the then minister for health, Stephen Donnelly, last June was "overly optimistic", but said regardless of that, "it's incredibly frustrating for families who have campaigned for this for years and who have children who are very much affected by this in a life-altering way". "Behind all of that is a deep concern for what will happen to their children when they're no longer here and perhaps no longer able to continue the fight on their behalf," she said. Ms Keely said it is imperative that the necessary data regulations are put in place, and the inquiry starts as soon as possible. "I want to know who knew what and when. I want people accountable for their actions, and be responsible for their actions," she said. She also wants more than the facts established. "Redress and an apology. I should have got the apology years ago," she said, before outlining the care her three sons require and the toll it has taken on her. "I've been doing this since I'm 18 years of age. I've been going to medical appointments, physios, speech, surgeries for every single thing you can think of. "When they come home for the surgeries, you have to really look after them. Then you have the incontinence you have to look after … and I have one child also who's going through his own issues and he's been put on antidepressants for them." "It's so draining they need constant care. You know, it's 24 hours. There's no stop. There's no stop button on this," she said. Any free time she gets, she pours into campaigning to get the inquiry up and running. In a statement, the Department of Health said since the appointment of Bríd O'Flaherty as chair, "significant work has been carried out to put in place the necessary arrangements to operationalise and establish the inquiry". It said the necessary data regulations are currently being drafted and that when they are finalised, it is anticipated that "the public facing elements of the inquiry will commence shortly thereafter". Ms Keely's message to the Minister is simple: "You need to get this inquiry up and running, you need to get this sorted."
Irish Examiner
26-05-2025
- Business
- Irish Examiner
Council for civil liberties brings High Court action against Microsoft over alleged data breaches
A High Court judge has allowed the Irish Council for Civil Liberties (ICCL) to initiate a class action-style case against Microsoft over alleged data breaches impacting a significant number of Irish consumers. The ICCL claims Microsoft Ireland Operations Ltd is infringing GDPR rules and the related Data Protection Act 2018 by processing personal data within its real-time bidding system for online advertising. On Monday, James Doherty, counsel for the ICCL and appearing with Sean O'Sullivan, brought an application seeking the court's approval in deeming the proceedings a representative action. A representative action can be brought on behalf of a group of consumers by an organisation that has been recognised as a qualified entity, under the Protection of the Collective Interests of Consumers Act 2023. The ICCL is one of two recognised qualified entities. In court documents, ICCL said it sought to bring the proceedings on behalf of all consumers in the State whose personal data rights are being allegedly infringed by Microsoft's processing. Noting that the ICCL's application appeared to be the first of its kind to come before the Irish courts, Mr Justice Barry O'Donnell said he was satisfied to deem the ICCL's intended proceedings as a representative action. He stressed the order was being granted with only the ICCL side represented, and said Microsoft would have an opportunity to seek to set aside the order if it wishes. The judge also granted permission to the ICCL to serve plenary summons on Microsoft. The ICCL is seeking injunctive reliefs from the court, including orders restraining Microsoft from processing certain identified categories of personal data. The ICCL's primary concerns, according to court documents, arise from Microsoft's alleged collection and processing of personal data for 'the purpose of provision of targeted advertising'. The ICCL raises concern about Microsoft's alleged 'broadcast' of 'profiles' of individual data subjects to 'large numbers' of prospective advertisers who use Microsoft's real-time bidding advertising system. The ICCL claims this raises questions as to whether individual data subjects are consenting to a 'wide and unsecured broadcast of their personal data', or if they are aware of 'the breadth of the processing of their personal data undertaken by Microsoft'. The ICCL claims that users of various Microsoft products and services, including Windows, Xbox, web-based Office, Edge web browser, and websites and apps that use Microsoft's Xandr advertising technology, are affected by the alleged data breaches.
Daily Mail
22-04-2025
- Daily Mail
My neighbour's pointed a camera at my garden and is filming my every move... what can I do? DEAN DUNHAM replies
My neighbour has installed CCTV and one of his cameras points directly into my garden. Do I not have any right to privacy on my property? R.M., via email. Dean Dunham replies: You do have a general right to privacy in your own home and garden. As I always say, never fall out with your neighbour unless it is absolutely necessary, so as a first step explain your concern to them and ask politely if they will adjust the camera angle or take other measures to ensure it does not capture your property. If this does not work, you will need to adopt a more formal approach, and the good news here is that the law is on your side. Your neighbour is obliged to comply with two laws due to his CCTV capturing your garden and these are called the General Data Protection Regulation – commonly known as GDPR – and the Data Protection Act 2018. Under these laws your neighbour should have informed you that he was using CCTV and that your garden is within its sight. In addition, these laws give you the right to request access to the footage of your garden or to ask for it to be deleted and your neighbour must comply. If your neighbour ignores his obligations under these laws and you are unable to resolve the matter amicably, your next step would be to file a complaint with the Information Commissioner's Office (ICO), which regulates data protection laws. The ICO will send a letter to your neighbour setting out the law and asking him to fall in line with his legal obligations. However, contrary to popular belief, the ICO will rarely take any enforcement action against a homeowner, so if your neighbour ignores this you will have to either take legal action yourself or report the matter to the police. In either case, this will need to be something you consider carefully and you will need to be able to demonstrate that this is causing you a fair amount of distress and that you are feeling 'harassed' by being captured on CCTV. Insurance firm is blaming my guttering for leak A few months ago water leaked into my home after a very heavy downpour. My insurance claim has now been denied on the basis that my guttering was at fault as it had not been installed correctly. What are my rights? P.J., via email. Dean Dunham replies: I always warn that if an insurance provider can find an excuse to wriggle out of a claim, it will, and on this occasion a poorly installed gutter could indeed potentially be such a valid excuse. Firstly, you need to ascertain from your provider why it has concluded that the guttering has been installed incorrectly. Usually this will be down to the pitch being wrong – gutters, therefore, must be installed with the correct slope to ensure that water flows smoothly towards the downspouts. It might be as a result of inappropriate materials being used, for example, not using sufficiently durable materials on a house near the sea, or having issues with joints, as too many of these can leave the guttering susceptible to leaks. Once you have ascertained which of these issues your provider believes is the problem, you should obtain the advice of a roofing/guttering specialist and effectively seek a second opinion. If they agree with your insurance provider's findings, then there is going to be little you can do, as your provider will almost certainly be within its rights to deny the claim. If you had the guttering installed in the last six years, or if it is still within a guarantee period, your best route of redress will be via the company that installed the guttering. You will have a claim under the Consumer Rights Act, which says that services, such as installing guttering, must be performed with 'reasonable care and skill'. If, however, your guttering expert disagrees with the insurance provider, raise a complaint and make sure you provide a copy of the report. If it continues to deny your claim, file one with the Financial Ombudsman Service.
Yahoo
15-04-2025
- Yahoo
Police officer admits unlawful access to personal data
A former police officer has admitted accessing the personal data of members of the public "purely for their own knowledge". A Dorset Police misconduct panel found the officer used a records management system between January 2023 and June 2024 without having a "legitimate or lawful reason to do so". They were found guilty of gross misconduct on Tuesday and will be placed on the police barred list. The force decided not to name the officer, who has now retired, as part of the proceedings. In August 2024 the officer admitted being guilty of an offence under section 170 of the Data Protection Act 2018 and received a conditional caution. During the hearing, they said after accessing some of the records they had contacted the person who was the subject of the data. The force said there was no evidence that any investigation was compromised as a result, or that the former officer had disclosed the information to anybody else. Deputy Chief Constable Rachel Farrell said the former officer's actions "constituted repeated unlawful behaviour". "They directly contravened the training they had received in this respect," she said. "I hope that the outcome of the hearing shows the importance we place on integrity. "This former officer's conduct fell well below the expected standards of anyone working in our organisation, discrediting not just Dorset Police but policing as a whole." During the hearing, it was noted that the former officer admitted the offences at the first opportunity and had shown remorse and regret. You can follow BBC Dorset on Facebook, X (Twitter), or Instagram. More than 140 police faced misconduct allegations Volunteer officer 'threatened' supermarket workers Police in WhatsApp chat guilty of gross misconduct Dorset Police
