Speeches

Speech by Mr Micheál Martin T.D., Minister for Health on the occasion of the launch of the Irish involvement in the NAAR Autism Genome Project in Our Lady´s Hospital for Sick Children, Crumlin

I am very pleased to be involved today in the launch of this international project. My interest in autism is well known and whenever possible I try to support sound research.

NAAR

The National Alliance for Autism Research (NAAR) is the first organisation in the U.S. dedicated to funding and accelerating biomedical research focusing on autism spectrum disorders. It was established in 1994 by parents of children with autism concerned about the limited amount of funding available for autism research. The research initially funded by NAAR has made a dramatic impact on the autism research landscape in the United States, Canada and Europe and has attracted more than $37 million in autism research awards by the National Institutes of Health (NIH) and other funding sources.

NAAR Autism Genome Project

The NAAR Autism Genome Project is a large-scale, collaborative genetics research project designed to map the human genome in the search for autism susceptibility genes – the genes responsible for the inherited risk of autism. This unprecedented endeavour is the largest research collaboration ever to focus on the genetics of autism. It includes more than 170 of the world´s leading genetic researchers from over 50 academic and research institutions focusing on autism and approximately 1,200 multiplex families (two children with autistic spectrum disorders and their parents) from all over the world who are directly affected by autism spectrum disorders.

The project is a partnership between the National for Autism Research (NAAR) and four US Institutes; the National Institute of Mental Health (NIMH), National Institue of Child Health and Human Development (NICHD), National Institute of Neurological Disorders& Stroke (NINDS) and the National Institute of Deafness and Other Communication disorders (NIDCD). Initially, the institutes have collectively committed $2.5 million towards this project and NAAR has committed $2 million.

The importance of collaborative research when it comes to rare disorders is well recognized. In order to satisfy statistical requirements, sample size must be sufficiently large. Whilst autism spectrum disorders are not, relatively speaking, that rare, it is difficult to locate enough persons for genetic studies. For this purpose one needs families with affected parents, siblings or twinships.

As already stated, the NAAR Autism Genome Project aims to tackle this problem by focussing on 1200 multiplex families i.e. two affected children and their families.

Irish involvement

Here in Ireland, there is a significant and very successful collaboration between the National Centre for Medical Genetics and Department of Medical Genetics, UCD, and Prof. Michael Gill, Dr Louise Gallagher and Prof. Michael Fitzgerald of Trinity College. They are studying the genetic aspects of autism and have been invited to join the project.

The fact that researchers here in Our Lady´s Hospital, Crumlin and their associates in UCD and TCD have been asked to join in this collaborative project is a source of great satisfaction to my Department and to me personally.

I am aware that were it not for the groundwork that has already been laid by our own researchers we would not have been invited to get involved. I would like to congratulate those whose efforts will now be built upon.

I recently met with Mr Adrian Jones and Dr Andy Shih, Director of Research and Programmes with NAAR. I informed them that my Department is very interested in supporting Irish participation in this project. I am awaiting more detailed information from them concerning the support which they would envisage receiving from us.

While a very significant investment has been made in recent years in services to support persons with autism and their families, the Government does accept that there is a need for ongoing investment in these services over the coming years.

In order to ensure however that we develop the most appropriate and effective therapeutic interventions, there is also a need for more clarity in relation to the factors behind autism. This is particularly important in relation to this area given the ongoing debate concerning both the causative factors and the many approaches to intervention which can lead to conflict between families of persons with autism and those seeking to support them. This is particularly pertinent where there is no sound research basis for a particular intervention.

I look forward therefore to the day when the fruits of this genetic research will lead to more definitive answers and therapeutic interventions for those affected by pervasive developmental disorders.