Tuesday, 5 November 2019

Questions (413, 414, 415, 556, 557)

Anne Rabbitte

Question:

413. Deputy Anne Rabbitte asked the Minister for Health the timeframe for the commencement of the HSE genetics programme; and if he will make a statement on the matter. [45590/19]

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Anne Rabbitte

Question:

414. Deputy Anne Rabbitte asked the Minister for Health when the review on personalised medicine will be completed; the date on which this will be available to the Houses of the Oireachtas; and if he will make a statement on the matter. [45589/19]

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Anne Rabbitte

Question:

415. Deputy Anne Rabbitte asked the Minister for Health his plans to undertake a public consultation with stakeholders on the development of the genetic healthcare strategy; and if he will make a statement on the matter. [45587/19]

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Anne Rabbitte

Question:

556. Deputy Anne Rabbitte asked the Minister for Health his plans to provide training for HSE staff on genetic screening; and if he will make a statement on the matter. [44667/19]

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Anne Rabbitte

Question:

557. Deputy Anne Rabbitte asked the Minister for Health the estimated number of patients that will benefit from whole genome sequencing; the steps he will take to ensure the adequacy of trained professionals to provide such a service; and if he will make a statement on the matter. [44668/19]

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Written answers (Question to Health)

I propose to take Questions Nos. 413 to 415, inclusive, 556 and 557 together.

Genomic medicine refers to the use of DNA analysis for the purposes of identifying genetic susceptibility to disease, differentiated drug responses based on genetic profiles, and is likely to increasingly include the application of gene editing. The implementation of genomic medicine in routine clinical care – often referred to as ‘personalised’, ‘precision’ or ‘stratified’ medicine – requires careful and comprehensive planning due to a range of scientific and social challenges. These include issues such as test reliability and validity, cost-effectiveness, health system and workforce readiness, and regulatory and ethical concerns. The application of genomic medicine is a relatively new and cutting-edge field; there are already some therapies in place, and considerable research being undertaken globally, to fully explore its potential applications.

Ireland is well placed for use of genomic medicine; with a relatively homogenous population, this provides opportunities to combine genetic information and health data. Ireland has a strong tradition of investing in genetic and genomic research through the Health Research Board, the Higher Education Authority and Science Foundation Ireland.

The 2014 Donnai and Newman Report commissioned by the HSE, recommended improvements in the governance, management and future development of genetic services. The 2016 Smith Report (Report of the National Genetic and Genomic Medicine Network Strategy Group) reviewed the Donnai and Newman Report and made recommendations for the next steps. On foot of these, in 2018 Acute Operations received new service development funding to begin the process of establishing a National Genetics and Genomics Medicine Network (NGGMN); to bring together all parties within the field of genomic medicine for multi-disciplinary working in a national clinical and research centre. The NGGMN will build the effective governance arrangements that recognises the interdependence between corporate, financial and clinical governance across the service and integrate them to deliver high quality, safe and reliable healthcare. Development of this NGGMN will be a joint initiative between Acute Operations and the Office of the Chief Clinical Officer and the recruitment process for a clinical lead is at an advanced stage.

As genomics is a new area of medicine, it is not possible to calculate how many patients might benefit, however it is likely that the specialisms of cancer, and rare diseases will be the among the first fields to benefit from advancements in genomics medicine. However, the demand for genetic assessment and testing is growing rapidly, due primarily to an increased awareness among the public and among health care professionals.

Many rare diseases are genetic in origin and, as such, effective genetic services can have an important role to play in relation to diagnosis and possible treatment. The medical genetics service in Our Lady’s Children’s Hospital, Crumlin provides services for patients and families affected by, or at risk of, a genetic disorder. It comprises three integrated units: a clinical genetics service; a cytogenetics laboratory and a molecular genetics laboratory. Our Lady’s Children’s Hospital, Crumlin, provided additional resources last year to support the hospital’s Department of Clinical Genetics. Investments in staff and equipment to further develop the service is continuing.

The National Cancer Strategy 2017-2026 highlighted the growing role of cancer genetics in cancer prevention and cancer care. The HSE's National Cancer Control Programme is working closely with clinical genetics and cancer genetics services in Our Lady’s Children’s Hospital, Crumlin and St James’s Hospital to develop the services to meet the growing need. Under the strategy, investments have been made in genetic counsellor, consultant and support positions, as well as cancer genetic testing.

I am aware of the significant opportunities and benefits afforded by genetic and genomic research, and in this regard, there are currently discussions underway with my officials. A key objective is to ensure that Ireland develops a comprehensive national policy/strategy, in consultation with stakeholders, which ensures that we both respond to these opportunities and overcome the not insignificant challenges of implementing a genomic medicine programme in a health service delivery context.

Regarding the provision of training for genetic services, as this is a service matter and I have asked the HSE to consider and respond directly to the Deputy.