Ms Ronnie Fay:

My colleague, Ms Kavanagh might come in as well. For us, it is ironic that we keep hearing from the State that it wants evidence-based planning and policies, yet it cuts the hands off us by not giving us the tools that would give us the evidence so that we can argue for what we know is needed.

Regading ethnic data, early on in Covid we knew that Travellers and Roma were more vulnerable and we asked the HSE, as far back as last March or April, to put ethnicity as a category on all the Covid tracking and testing information. To be honest, it did finally get introduced, but again, as the Deputy said, some of the people did not feel comfortable and they did not ask the questions so it did not get implemented. We had the experience of piloting the ethnicity question in the Rotunda Hospital more than 20 years ago. Exactly as the Deputy said, we provided training to the staff on why they needed to do this. We worked with Travellers, Roma and other minority ethnic groups to explain that this question would be asked and what the purpose of it was in order that both the service providers and the service users would understand. We had 100% take-up and then after five months or so it went to zero. We wondered what had gone wrong so we went in to find out. The person who had been asking the question at the point of registration had gone on maternity leave and the new administrator did not feel comfortable asking the question, so it was not asked. It just shows the importance of ongoing training. Data disaggregated like this can be particularly sensitive but it is totally legal, and it must be done with a human rights framework, which means everybody gets asked the question, not just minorities.

Ms McDonnell gave the example of the maternity hospital. Travellers have 20 times the rate of galactosemia, which means that if a baby is breastfed, brain damage could be caused. They have to get the heel-prick test done quickly and get the results so that they are not exposed to danger but also facilitated to breastfeed. Traveller women had come to me at the time and said they were being discriminated against as they were not allowed to use formula milk and they were given a special soya milk. I thought that was most peculiar. Being young at the time I went to hospital and asked what was gong on. They explained the rationale, which was a very good one, but no one had explained it to Travellers. They were experiencing it as discrimination when in fact it was well intentioned, which shows the importance of collaboration and education and training.

I asked how they knew so-and-so was a Traveller and they said it was by their name or address. I said lots of Travellers live in houses and are now beginning to marry settled people. There are different Traveller names. Not every Joyce or McDonagh is a Traveller. What they were doing was well intentioned but very poor practice. That is why we would say in terms of human rights it should be a universal question that everybody is asked. All of us should be asked the question. It is based on the principle of voluntary self-identification. One cannot be ascribed a label and be told one is a Traveller and be put in a box. It is up to the individual to identify. The information that is collected must only be used for the purpose for which it was collected and not for other purposes that would make people suspicious. Ethnic data is really important. It has to be done within a human rights framework, but consistent questions are needed. That is why we recommend the census question on ethnicity. Then we will have comparative data. Although people may change jobs or Departments in the public service and Civil Service, they know why they are asking the question, because it is the same question no matter what Department or agency they are working in, and equally the service user knows. It is the same as the way traditionally in Ireland people might have been asked their religion or gender. It becomes the norm and then everybody understands. That is what we promote. Ms Kavanagh might want to talk about GDPR.