Expert Group on a National Cancer Biobank Participants

• Professor Bernadette Herrity (Chair), Professor Emeritus of Public Health & Epidemiology at University College Dublin (Ministerial nominee)
• Dr. Anne Cody, Head of Research Infrastructure and Special Initiatives Unit, Health Research Board (Health Research Board nominee)
• Dr. Carolyn Compton, Office of Biorepositories and Biospecimen Research, National Cancer Institute (National Cancer Institute nominee)
• Dr. Davida de la Harpe, Assistant National Director, Health Intelligence, Health Service Executive (Health Service Executive nominee)
• Professor Eoin Gaffney, Consultant Histopathologist, St. James's Hospital, Dublin
  (Irish Cancer Society nominee)
• Dr. Pierre Hainaut, Head of the Molecular Carcinogenesis and Biomarkers Group, International Agency for Research on Cancer (International Agency for Research on Cancer nominee)
• Dr. Joe Harford, Director, Office of International Affairs, National Cancer Institute
  (National Cancer Institute nominee)
• Dr. Tony Holohan, Deputy Chief Medical Officer, Department of Health & Children
  (Ministerial nominee)
• Dr. Jackie James, Senior Lecturer and Consultant Pathologist, Centre for Cancer Research and Cell Biology, Queen's University Belfast & Royal Victoria Hospital, Belfast
  (Department of Health, Social Services and Public Safety nominee)
• Professor Elaine Kay, Consultant Histopathologist, Beaumont Hospital, Dublin
  (Irish Cancer Society nominee)
• Prof. Mark Lawler, Consultant Clinical Geneticist, Cancer Molecular Lab, St. James's Hospital, Dublin (Irish Cancer Society nominee)
• Mr. John McCormack, CEO, Irish Cancer Society (Irish Cancer Society nominee)
• Mr. Brian Moulton, CEO, Irish Co-operative Oncology Research Group
  (Irish Co-operative Oncology Research Group nominee)
• Dr. Kate Williamson, Senior Lecturer, Centre for Cancer Research and Cell Biology, Queen's University Belfast & Royal Victoria Hospital, Belfast (Department of Health, Social Services and Public Safety nominee)

Terms of Reference

Develop proposals for a National Cancer Biobank, including the following:

1. The research and healthcare benefits achievable in the immediate, short and long term.

2. Assessment of workable, quality assured and cost effective models of delivery (to include centralised or distributed models) and a recommendation on the preferred model.

3. Governance, structure and organisation of the preferred model.

4. The operation and costings of a Biobank to include:

• Information governance, including security and confidentiality.
• An information technology platform and associated integrated infrastructure for the implementation and maintenance of the network.
• ICT requirements including hardware and software integration with existing systems.
• Protocols for access to information and specimens.
• Human resource requirements.
• Funding requirements, both capital and revenue.
• Appropriate funding sources.

5. Standards and quality assurance arrangements in line with best international practice for:

• Data coding, classification, storage and protection.
• Specimen collection, handling and storage.
• Security and appropriate backup.

6. Ethical issues, including patient consent and confidentiality.

7. The appropriate relationships which could be developed:

• Academic-industry partnerships.
• Incorporation of existing Irish cancer biobanks.
• Linkage with other Irish biobanks.
• Linkage with existing international cancer biobanks.

8. Appropriate linkages with research programmes and potential for collaborative initiatives, including cancer clinical trials.

9. Patient education and awareness.

10. Recommendations on North/South collaboration and potential for an all island biobank.

11. Recommendations on collaboration with the National Cancer Institute under the Consortium.

This information is also available online, at http://www.dohc.ie/working_groups/biobank/.