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METHOD:PUBLISH
BEGIN:VEVENT
DTSTAMP:20180124T134130Z
DTSTART:20180130T150000Z
DTEND:20180130T163000Z
SUMMARY:CMI Afternoon Seminar Series: Balancing the Local and the Univers
 al in Maintaining Ethical Access to a Genomics Biobank
UID:{http://www.columbasystems.com/customers/uom/gpp/eventid/}ssn-j6xl717
 7-2duuxt
DESCRIPTION:Dr Catherine Heeney\, University of Edinburgh\n\nAbstract:\nT
 he presentation will draw upon work completed with my colleague\, Dr Sho
 na Kerr based upon our experience of working with the access committee f
 or Generation Scotland (GS)\, a biorepository that began recruitment ove
 r a decade ago and\, which now holds data from the 24\,000 plus particip
 ants.  The  GS infrastructure continues to exist and manage access to a 
 repository.  \n\nIn policy and governance discussions of genetic and gen
 omic data sharing\, the rights of research subjects are often balanced a
 gainst the scientific benefits of allowing open access to biomedical dat
 a.  However\, this dichotomous focus can obscure other matters that are 
 relevant to the ethical running of the biobank.  These include the will 
 and the ability to sustain the resource. Generation Scotland (GS) is con
 sidered as one context in which a global policy agenda favouring open ac
 cess meets local issues of governance and sustainability.  We seek to ad
 dress gaps in discussion in scientific\, law and policy arenas about the
  means to ensure open access functions well but often neglects the conte
 xtual aspects of biobanking.  We explore the balancing of data accessibi
 lity with ethical considerations and governance for GS in the evolving p
 olicy landscape of the past ten years. \n\nA review of policy documents 
 and academic articles drawn from science and bioethics literatures was c
 arried out with a focus on open access\, the protection of data subjects
  and questions pertaining to sustainability\, for example in relation to
  funding or attribution of credit to repository staff.  A further aspect
  of the methodology is based upon participant-observation within the Gen
 eration Scotland Access Committee\, of which both authors are members. V
 ia engagement with GS local elements of governance are foregrounded. Whi
 lst decisions around data access are influenced by global policy objecti
 ves\, local arrangements for governance and practices such as linkage to
  health records also central. At the local level\, it will be argued\, m
 oreover\, that governance decisions regarding access to the biobank are 
 intertwined with considerations about maintenance and viability. We show
  that in addition to the focus upon ever more universal and standardised
  practices\, the local expertise and commitment built up when creating a
 nd maintaining repositories such as GS must be taken into account. \n\nT
 ea/coffee and cakes from 2.45.\n\nAll welcome.  No registration necessar
 y.\n\nThe Cathie Marsh Institute (CMI) provides a focal point at The Uni
 versity of Manchester for the application of quantitative methods in int
 erdisciplinary social science research in order to generate a world clas
 s research environment.\n\nThis seminar is being in collaboration with t
 he Confidentiality and Privacy (CAPRI) Research Group at CMI: \nhttps://
 www.cmist.manchester.ac.uk/research/research-groups/capri/
STATUS:TENTATIVE
TRANSP:TRANSPARENT
CLASS:PUBLIC
LOCATION:CMI Seminar Room\, 2.07\, Humanities Bridgeford Street\, Manches
 ter
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