GeneLibrary Ireland - an all-island biomedical research infrastructure Design Phase

Molecular Medicine Ireland, in association with Queens University Belfast and the University of Ulster and with Dr Peter Doran as principal applicant, submitted the report of the design phase of GeneLibrary Ireland to the Health Research Board (HRB) and the Health and Social Care Research and Development Office (HSC R&D Office) in February 2009.

Molecular Medicine Ireland was contracted by the HRB and HSC R&D Office to develop the design phase for the GeneLibrary Ireland initiative. The design phase emerged from a feasibility report by the HRB and HSC R&D Office. The establishment of GeneLibrary Ireland as a biomedical research infrastructure will enable and support the continued development of translational and genetic research on the island of Ireland. This control biobank of 10,000 DNA and blood samples from healthy volunteers on the island, together with key phenotypic information will serve as a control population to study the genetic determinants of common diseases, which significantly impact patients in Ireland and Northern Ireland. These diseases include cardiovascular disease, cancer, diabetes, arthritis, respiratory disease and cognitive disorders along with key disease areas that are over represented in the population such as coeliac disease, multiple sclerosis, cystic fibrosis and haemachromatosis. In addition, this bio-collection will provide a valuable resource to study the genetic background of the population on the island of Ireland.

The preparation of the design phase of GeneLibrary Ireland involved the support and contribution of over eighty experts across seven collaborating academic institutions and patient organisations in Ireland and Northern Ireland, who contributed their expertise to the creation of an all-island biomedical research infrastructure coordinated by Molecular Medicine Ireland.

Professor Kurt Zatloukal, a member of the GeneLibrary Ireland Scientific Advisory Board and the lead Co-ordinator of the pan-European Biobanking and Biomolecular Resources Research Infrastructure, has stated that ‘the design phase of GeneLibrary Ireland is an excellent plan how to establish a world-class all-island biomedical research infrastructure that is well embedded in the emerging European research infrastructure landscape’. 

For a copy of the GeneLibrary Ireland - an all island biomedical research infrastructure Design Phase report click here

Background

In 2005, the Health Research Board (HRB) in Dublin and Research and Development (R&D) Office in Belfast published a report of an expert group on the establishment of an all-island GeneLibrary –‘GeneLibrary Ireland: An essential new resource to underpin health research in Ireland 2005’. In response to a call from the HRB and the R&D Office to develop the GeneLibrary Ireland project, Molecular Medicine Ireland coordinated a successful application, led by Dr. Peter Doran, on behalf of our partner institutions and in association with Queens University Belfast to undertake the preparatory phase of establishing a control biobank of healthy Irish volunteer samples. The University of Ulster has since joined the consortium to make this a truly all-island initiative for Ireland.

The GeneLibrary Ireland biobank, will contain DNA and blood samples collected from 10,000 volunteers throughout the island of Ireland along with the results of a detailed medical examination (e.g. information about height, weight, lung and heart function) and information on lifestyle and environment. The development of GeneLibrary Ireland will ensure that there is a comprehensive resource of control bio-materials with well-documented medical and clinical information, which will allow researchers to study the role that different genes play in disease and health processes. In particular as medical research moves from the study of simple monogenetic disorders to the investigation of complex diseases, the availability of biological materials will determine our ability to dissect out the interplay of genetic factors that contribute to complex polygenic diseases. In order to investigate these complex and often subtle effects of genes on health and disease, there is a real need to study information and samples from a large cohort of people. Such medical information and samples are not easily obtained and collection often proves costly and time consuming. The significance of the GeneLibrary Ireland resource is that researchers with individual studies will no longer need to spend scarce resources on large recruitment campaigns to get appropriate control populations and they will be able to conduct their studies more rapidly and efficiently and avoid duplication. This more efficient and cost-effective approach will benefit research and the results will be of benefit to everyone. GeneLibrary Ireland will also provide an important baseline evaluation of the health status of the population of Ireland and serve as a control for future public health studies.

An additional aim of GeneLibrary Ireland is to conduct a health assessment of volunteers which will provide an important baseline evaluation of the health status of people on the island of Ireland and will provide an important indicator of the health of the population and serve as a control for future public health studies.

It is proposed that GeneLibrary Ireland will become an important part of the infrastructure for biomedical and health research throughout the island of Ireland and will serve as an all-island reference library of donor samples and health information acting as a common control group for a wide range of studies by health and biomedical scientists. This in turn will be a powerful and valuable resource for health research on the island of Ireland which, fuelled by the human genome project, will lead to discoveries about causes of disease, new diagnostic tests, new drugs and even new cures.

It is important that GeneLibrary Ireland will be developed and standardised in line with international best practice to ensure harmonisation with the pan-European Biobanking and Biomolecular Resources Research Infrastructure (BBMRI) network. Molecular Medicine Ireland is actively participating in the preparatory phase of BBMRI to ensure that GeneLibrary Ireland can learn from international biobanking expertise. For further information on BBMRI see http://www.biobanks.eu

Objectives of the GeneLibrary Ireland preparatory phase:

• To establish the teams necessary to deliver an integrated and representative library of genetic material and health information from the population on the island of Ireland
• To prepare a detailed plan for the recruitment and inclusion of participants
• To ensure that all potential sites operate in a harmonised way

Figure: Organisational structure for GeneLibrary Ireland

 

GeneLibrary Ireland Scientific Advisory Board

Name	Organisation
Prof. Martin Yuille	Reader in Biological Resource Management, Associate Coordinator for the BBMRI, Archive Director of UK DNA Banking Network, University of Manchester School of Translational Medicine Centre for Integrated Genomic Medical Research, UK
Prof. Paul Burton	Professor of Genetic Epidemiology, Department of Health Sciences and Department of Genetics, University of Leicester, UK
Prof. Paul Burton	Professor of Genetic Epidemiology, Department of Health Sciences and Department of Genetics, University of Leicester, UK
Dr. Linda Morgan	Senior Lecturer / Honorary Consultant in Clinical Chemistry, University of Nottingham, UK
Prof. David Clayton	Wellcome Trust/Juvenile Diabetes Trust Principal Research Fellow, Cambridge University, UK
Prof. Gerry Thomas	Director of Scientific Services, Wales Cancer Bank, Professor of Molecular Pathology, Imperial College London, Hammersmith Hospital, UK
Prof. Peter Donnelly	Centre Director, Wellcome Trust Centre for Human Genetics, UK

GeneLibrary Ireland Steering Group

Name	Organisation
Chair Dr. Ruth Barrington	CEO, Molecular Medicine Ireland
Principal Investigator Dr. Peter Doran	Scientific Director, UCD Mater Clinical Research Centre
Dr. Patrick Mallon	UCD Lecturer in Medicine and Consultant in Infectious Diseases, Mater Misericordiae University Hospital
Dr. Joe McPartlin	Director, Trinity Biobank Institute of Molecular Medicine,TCD
Dr Louise Kenny	Senior Lecturer and Consultant in Obstetrics and Gynaecology, UCHG and UCC
Prof. Michael Kerins	Professor of Surgery at UCHG and Head of the Academic Department of Surgery at NUI Galway
Prof David Croke	Professor of Biochemistry, Head of Department,Molecular & Cellular Therapeutics,RCSI
Dr David Savage	Senior Lecturer, Queens University Belfast Genetic Epidemiology Research Group
Prof. Peter Maxwell	Professor of Renal Medicine Queens University Belfast Consultant Nephrologist, Belfast City Hospital
Ms Margaret Cooney	ICRIN Coordinator, Molecular Medicine Ireland
Prof Tony Bjourson	Director Centre for Molecular Biosciences, School of Biomedical Sciences, Ulster University of Coleraine
Ms. Eibhlin Mulroe	CEO, Irish Platform for Patients Organisations, Science and Industry (IPPOSI)

GeneLibrary Ireland Project Team

Name	Organisation
Principal Investigator Peter Doran	Director, UCD Mater Clinical Research Centre
Jan Guerin	Programme Manager for Research, Molecular Medicine Ireland
Mel Clifford	Director, Clifford Robbins Ltd
Ruth Barrington	CEO, Molecular Medicine Ireland
Joe McPartlin	Director, Trinity Biobank, Institute of Molecular Medicine, TCD

 

Work Packages

GeneLibrary Ireland is a multi-institutional and multidisciplinary undertaking which will require substantial upfront planning. With this in mind a number of Work Packages (WPs) have been identified in key areas to deliver this project and are outlined below. These WPs will address all aspects of establishing and delivering GeneLibrary Ireland and will inform the final report in each of these key areas. Six Working Groups have been formed to deliver these Work Packageswhich are chaired by key experts in the relevant areas as highlighted in the table below.. It was noted that Work Packages 4, 5 and 6 should be amalgamated into one Working Group, WG 4, due to the significant overlap between the areas. Various site visits to similar biobanks in Europe will be arranged in order to learn from biobanks that are already established and to ensure that this control is developed in line with international best practice.

No	Working groups	Chair
1	Ethics, Legal and Societal issues	Dr. Deirdre Madden, Senior Lecturer, Faculty of Law, UCC
2	Communications	Ms. Avril Daly, Head of Public Affairs, Fighting Blindness
3	Participant Recruitment Strategy	Dr. Leslie Boydell, Associate Medical Director for Public Health, Belfast Health and Social Care Trust
4	Sample collection, storage and processing, data management and IT infrastructure	Dr. Joe McPartlin, Director, Trinity Biobank Institute of Molecular Medicine, TCD
5
6
7	Valued added research programme	Prof. Tony Bjourson, Director of Biomedical Sciences Research Institute, School of Biomedical Sciences, University of Ulster
8	Funding and finance	Mr. Vincent McCabe, Irish Heart Foundation

Steering Group

Aim: The Steering Group will define an effective governance, management and organisational framework to ensure the integrity of GeneLibrary Ireland in line with international best practice. The Steering Group will also provide expertise and oversight of the final report on the preparatory phase of establishing a control biobank and how this can be implemented at an all-island level for Ireland.

Working Group 1: Ethical, legal and societal issues

Aim: To ensure that GeneLibrary Ireland adheres to the highest possible ethical, legal and data protection standards in order to protect the privacy and confidentiality of participants and the integrity and ethical use of bio-materials within the biobank.

Working Group 2: Communication

Aim: To develop a strategic public information campaign explaining the rationale, scientific and public health benefits of GeneLibrary Ireland and enlisting public support for this initiative. The publicity campaign will raise awareness and positive feelings of ownership of the project amongst the people of Ireland to facilitate strong participant recruitment.

Working Group 3: Participant recruitment strategy

Aim: To develop an effective recruitment strategy to ensure that the 10,000 participant target will be realised for GeneLibrary Ireland and that this control biobank is representative of the population of Ireland as a whole.

GeneLibrary Ireland Working Group 4: Sample and Data Collection, Sample Storage and Processing, Data Management and IT Infrastructure’

Aim: To develop internationally-harmonised operational procedures for sample and data collection, sample processing, storage and distribution along with an integrated IT data management platform to support GeneLibrary Ireland in order to ensure sample and data uniformity and integrity accross sites.

Working Group 5 Value added research programmes

Aim: To identify and develop relationships with partners in health and science to ensure maximum utilisation of the Genelibrary Ireland to ensure optimal return on investment.

Working Group 6: Funding and financing

Aim: To develop a financial management structure through the creation of a business plan to establish Genelibrary Ireland and to maintain its long-term sustainability.

Key Deliverable:

The key deliverable of this preparatory phase is to present our funders, the HRB and the R&D Office with a blueprint of how GeneLibrary Ireland should be established and maintained before the end of 2008. The decision to proceed to the commissioning of the GeneLibrary Ireland will then be a matter for the HRB and R&D Office.