Development and Progress of Ireland's Biobank Network: Ethical, Legal, and Social Implications (ELSI), Standardized Documentation, Sample and Data Release, and International Perspective

Hdl Handle:
http://hdl.handle.net/10147/301914
Title:
Development and Progress of Ireland's Biobank Network: Ethical, Legal, and Social Implications (ELSI), Standardized Documentation, Sample and Data Release, and International Perspective
Authors:
Mee, Blanaid; Gaffney, Eoin; Glynn, Sharon A.; Donatello, Simona; Carroll, Paul; Connolly,Elizabeth; Mc Garrigle, Sarah; Boyle, Terry; Flannery, Delia; Sullivan, Francis J.; McCormick, Paul; Griffin, Mairead; Muldoon, Cian
Affiliation:
1St. James's Hospital, Dublin, Ireland. 2Prostate Cancer Institute, National University of Ireland Galway, Galway, Ireland. 3Beaumont Hospital, Dublin, Ireland. 4Trinity Centre for Health Sciences, Institute of Molecular Medicine, Dublin, Ireland. 5Department of Radiation Oncology, Galway University Hospital, Galway, Ireland. 6Cork University Hospital, Cork, Ireland. 7Barrister-at-Law, Four Courts, Dublin and Lecturer in Legal Medicine, Forensic and Legal Medicine, School of Medicine and Medical Sciences, Dublin, Ireland. 8HRB Clinical Research Facilities Galway & Dublin, NUI Galway and Trinity College Dublin, Ireland
Citation:
Blanaid Mee, Eoin Gaffney, Sharon A. Glynn, Simona Donatello, Paul Carroll, Elizabeth Connolly, Sarah Mc Garrigle, Terry Boyle, Delia Flannery, Francis J. Sullivan, Paul McCormick, Mairead Griffin, Cian Muldoon, Joanna Fay, Tony O'Grady, Elaine Kay, Joe Eustace, Louise Burke, Asim A. Sheikh, Stephen Finn, Richard Flavin, and Francis J. Giles. Biopreservation and Biobanking. February 2013, 11(1): 3-11. doi:10.1089/bio.2012.0028.
Publisher:
Mary Ann Liebert Inc.
Issue Date:
19-Feb-2013
URI:
http://hdl.handle.net/10147/301914
Additional Links:
http://online.liebertpub.com/doi/full/10.1089/bio.2012.0028
Abstract:
Biobank Ireland Trust (BIT) was established in 2004 to promote and develop an Irish biobank network to benefit patients, researchers, industry, and the economy. The network commenced in 2008 with two hospital biobanks and currently consists of biobanks in the four main cancer hospitals in Ireland. The St. James's Hospital (SJH) Biobank coordinates the network. Procedures, based on ISBER and NCI guidelines, are standardized across the network. Policies and documents—Patient Consent Policy, Patient Information Sheet, Biobank Consent Form, Sample and Data Access Policy (SAP), and Sample Application Form have been agreed upon (after robust discussion) for use in each hospital. An optimum sequence for document preparation and submission for review is outlined. Once consensus is reached among the participating biobanks, the SJH biobank liaises with the Research and Ethics Committees, the Office of the Data Protection Commissioner, The National Cancer Registry (NCR), patient advocate groups, researchers, and other stakeholders. The NCR provides de-identified data from its database for researchers via unique biobank codes. ELSI issues discussed include the introduction of prospective consent across the network and the return of significant research results to patients. Only 4 of 363 patients opted to be re-contacted and re-consented on each occasion that their samples are included in a new project. It was decided, after multidisciplinary discussion, that results will not be returned to patients. The SAP is modeled on those of several international networks. Biobank Ireland is affiliated with international biobanking groups—Marble Arch International Working Group, ISBER, and ESBB. The Irish government continues to deliberate on how to fund and implement biobanking nationally. Meanwhile BIT uses every opportunity to promote awareness of the benefits of biobanking in events and in the media.
Item Type:
Article
Language:
en
Local subject classification:
BIOBANKING; NETWORKING
Sponsors:
NIH grant number R21 CA139476-01

Full metadata record

DC FieldValue Language
dc.contributor.authorMee, Blanaiden_GB
dc.contributor.authorGaffney, Eoinen_GB
dc.contributor.authorGlynn, Sharon A.en_GB
dc.contributor.authorDonatello, Simonaen_GB
dc.contributor.authorCarroll, Paulen_GB
dc.contributor.authorConnolly,Elizabethen_GB
dc.contributor.authorMc Garrigle, Sarahen_GB
dc.contributor.authorBoyle, Terryen_GB
dc.contributor.authorFlannery, Deliaen_GB
dc.contributor.authorSullivan, Francis J.en_GB
dc.contributor.authorMcCormick, Paulen_GB
dc.contributor.authorGriffin, Maireaden_GB
dc.contributor.authorMuldoon, Cianen_GB
dc.date.accessioned2013-09-19T13:50:37Z-
dc.date.available2013-09-19T13:50:37Z-
dc.date.issued2013-02-19-
dc.identifier.citationBlanaid Mee, Eoin Gaffney, Sharon A. Glynn, Simona Donatello, Paul Carroll, Elizabeth Connolly, Sarah Mc Garrigle, Terry Boyle, Delia Flannery, Francis J. Sullivan, Paul McCormick, Mairead Griffin, Cian Muldoon, Joanna Fay, Tony O'Grady, Elaine Kay, Joe Eustace, Louise Burke, Asim A. Sheikh, Stephen Finn, Richard Flavin, and Francis J. Giles. Biopreservation and Biobanking. February 2013, 11(1): 3-11. doi:10.1089/bio.2012.0028.en_GB
dc.identifier.urihttp://hdl.handle.net/10147/301914-
dc.description.abstractBiobank Ireland Trust (BIT) was established in 2004 to promote and develop an Irish biobank network to benefit patients, researchers, industry, and the economy. The network commenced in 2008 with two hospital biobanks and currently consists of biobanks in the four main cancer hospitals in Ireland. The St. James's Hospital (SJH) Biobank coordinates the network. Procedures, based on ISBER and NCI guidelines, are standardized across the network. Policies and documents—Patient Consent Policy, Patient Information Sheet, Biobank Consent Form, Sample and Data Access Policy (SAP), and Sample Application Form have been agreed upon (after robust discussion) for use in each hospital. An optimum sequence for document preparation and submission for review is outlined. Once consensus is reached among the participating biobanks, the SJH biobank liaises with the Research and Ethics Committees, the Office of the Data Protection Commissioner, The National Cancer Registry (NCR), patient advocate groups, researchers, and other stakeholders. The NCR provides de-identified data from its database for researchers via unique biobank codes. ELSI issues discussed include the introduction of prospective consent across the network and the return of significant research results to patients. Only 4 of 363 patients opted to be re-contacted and re-consented on each occasion that their samples are included in a new project. It was decided, after multidisciplinary discussion, that results will not be returned to patients. The SAP is modeled on those of several international networks. Biobank Ireland is affiliated with international biobanking groups—Marble Arch International Working Group, ISBER, and ESBB. The Irish government continues to deliberate on how to fund and implement biobanking nationally. Meanwhile BIT uses every opportunity to promote awareness of the benefits of biobanking in events and in the media.en_GB
dc.description.sponsorshipNIH grant number R21 CA139476-01en_GB
dc.language.isoenen
dc.publisherMary Ann Liebert Inc.en_GB
dc.relation.urlhttp://online.liebertpub.com/doi/full/10.1089/bio.2012.0028en_GB
dc.subject.otherBIOBANKINGen_GB
dc.subject.otherNETWORKINGen_GB
dc.titleDevelopment and Progress of Ireland's Biobank Network: Ethical, Legal, and Social Implications (ELSI), Standardized Documentation, Sample and Data Release, and International Perspectiveen_GB
dc.typeArticleen
dc.contributor.department1St. James's Hospital, Dublin, Ireland. 2Prostate Cancer Institute, National University of Ireland Galway, Galway, Ireland. 3Beaumont Hospital, Dublin, Ireland. 4Trinity Centre for Health Sciences, Institute of Molecular Medicine, Dublin, Ireland. 5Department of Radiation Oncology, Galway University Hospital, Galway, Ireland. 6Cork University Hospital, Cork, Ireland. 7Barrister-at-Law, Four Courts, Dublin and Lecturer in Legal Medicine, Forensic and Legal Medicine, School of Medicine and Medical Sciences, Dublin, Ireland. 8HRB Clinical Research Facilities Galway & Dublin, NUI Galway and Trinity College Dublin, Irelanden_GB
dc.description.fundingOtheren
dc.description.provinceLeinsteren
dc.description.peer-reviewpeer-reviewen
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