Alice-Mary Higgins (Independent) | Oireachtas source

I am sharing my time with Senator Dolan. I welcome those in the Visitors Gallery. I commend Senator Norris on his thoughtful contribution. This is an important motion.

I had the opportunity to speak on a very similar motion or resolution last week at the OSCE, where Italian parliamentarians — this issue has been led by Italy — tabled a successful resolution on neonatal care as a social development target. Maybe that is relevant in this context. As with the motion before us, the resolution focused on the issue of diagnosis. I had the opportunity to contribute to the OSCE debate and I proposed some small amendments to the resolution. I did not feel it necessary to propose amendments to Senator Norris's resolution but I will still flag the issue I wish to raise.

It is extraordinarily important that every family have the opportunity to gain access to information on any treatable condition it is possible to know about. There is also a case to be made for conditions that may not be treatable. It is important that society plans for the best possible quality of life for individuals born with a condition that may not be treatable in the longer term. It is a matter of ensuring that society has the resources to provide support and care for all its citizens, including those who may carry a condition for a period.

While an expansion from eight to 40 under the testing programme is certainly very positive, there is an residual underlying issue. It applies just as much now as it would under the acceptance of the very good proposal by Senator Norris. The matter must be addressed in a balanced way, however. I hope that the national screening committee mentioned by the Minister, Deputy Harris, will be able to engage on this. I refer to assurances regarding how this is done. The HSE website states samples are never used for commercial purposes. That is key because there have been very serious concerns over the database of heel prick genetic information that was gathered and due to be destroyed by the State but which was not. There is a lack of clarity over what mechanisms were put in place over future use of the data. This information must be for the individuals, their families and the public health service. It is vital that there be no commercial usage, not even indirect commercial brokering of usage. This is so data will not fall into private hands. I say this in the context of recent concerns being addressed in terms of Genomics Medicine Ireland, GMI, which is currently developing a genetics database that it hopes to contain more than 400,000 samples. That is its goal. Some very concerning issues arose in regard to GMI in that it has been asking questions about where biobanks might be stored, indicating that the genetic data it is collecting would be shared first with pharmaceutical companies and only become available for public use after a couple of years. That is not the case at present with the publicly delivered heel prick test. It is vital that the latter test remain something the State does and supports in regard to families.

The 90% take-up of the heel prick test was mentioned. I would like it to be 95% because I would like all children to benefit from a diagnosis in the planning of their lives and the best possible treatment for them. To give the public the assurance it will need to engage constructively on the testing, it will be very important for any new legislation to have appropriate privacy provisions and firewalls applying to any commercial usage of genetic material. The proposer of the motion is very well intentioned.