'Why us?' New genetics service aims to give answers to parents of children with cancer
'Now we are starting to be able to understand better why cancer happens in children,' says Noelle Cullinan who is leading the new programme. Stock picture
Parents of children diagnosed with cancer in Ireland will get faster answers as to why their child is sick through a new cancer genetics service.
Between 160 and 200 children are newly diagnosed with cancers in Ireland every year.
The paediatric oncologist heading up this new programme said the question she hears most often from families is “why us”.
Noelle Cullinan, consultant paediatric oncologist with a special interest in cancer genetics, said parents also want to know whether their other children or planned pregnancies might face similar risks.
“A lot of families really struggle with why this is happening to their child, when they are so little,” said Dr Cullinan. “So every single family I meet asks ‘why’.
“We were never really able to answer that question. Now we are starting to be able to understand better why cancer happens in children. It has been an unmet need for quite a while.”
The programme, building on international research in genetics, opened less than six months ago.
“We’ve had 12 families who had testing already, and probably an equivalent number waiting to be considered.”
It involves different specialities at Children’s Health Ireland (CHI) at Crumlin, including genetics, haematology, and oncology, which she said is crucial.
Children can be tested earlier through streamlining of priority processes and have results reviewed more quickly by this team of specialists. Patients in families where there is an identified hereditary cancer risk can be streamlined for monitoring.
Family members can also be tested more easily than before with a ‘cascade testing’ process in place.
Genetic testing has also been changed for certain tumours, including Wilms tumours.
Dr Cullinan’s role was funded by the Irish Cancer Society in collaboration with Crumlin hospital. This is the national childhood and young adolescent cancer centre with the majority of care delivered here, supported by 16 paediatric centres.
“Cork, for example, also has an adult centre and they would give some chemotherapy to our children. That would be the same in some of the other bigger centres,” she said.
“We couldn’t do our job without the 16 centres, like in Cork, Limerick, Kerry, Wexford, Waterford, all of the children will have close links to their local paediatric centres.”
The new programme is seeking to expand further, but, similar to other areas of genetic testing, faces recruitment challenges.
CHI at Crumlin is recruiting for a genetics counsellor, and Dr Cullinan urged qualified applicants to apply.
“Clinical genetics resources in general are short, they are doing an excellent job with the resources they have,” she said, referring to staff and funding.
A new national genetics and genomics strategy is currently being developed.
“There is a plan to release a first brief by the end of this year, to plan what the national genetic services will look at.
"We are hoping that through this initiative, paediatric and adult cancer genetic services and genetic services in general will have better resources and better funding.”
• Dr Cullinan is speaking at the Cayas (Childhood, Adolescent and Young Adult cancers and Survivorship) conference today.
• You can learn more about Cayas on its website, where you can also attend today's conference via its virtual online portal.
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