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Balancing the Local and the Universal in Maintaining Ethical Access to a Genomics Biobank Catherine Heeney1* and Shona M

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Balancing the Local and the Universal in Maintaining Ethical Access to a Genomics Biobank Catherine Heeney1* and Shona M Heeney and Kerr BMC Medical Ethics (2017) 18:80 DOI 10.1186/s12910-017-0240-7 RESEARCH ARTICLE Open Access Balancing the local and the universal in maintaining ethical access to a genomics biobank Catherine Heeney1* and Shona M. Kerr2 Abstract Background: Issues of balancing data accessibility with ethical considerations and governance of a genomics research biobank, Generation Scotland, are explored within the evolving policy landscape of the past ten years. During this time data sharing and open data access have become increasingly important topics in biomedical research. Decisions around data access are influenced by local arrangements for governance and practices such as linkage to health records, and the global through policies for biobanking and the sharing of data with large-scale biomedical research data resources and consortia. Methods: We use a literature review of policy relevant documents which apply to the conduct of biobanks in two areas: support for open access and the protection of data subjects and researchers managing a bioresource. We present examples of decision making within a biobank based upon observations of the Generation Scotland Access Committee. We reflect upon how the drive towards open access raises ethical dilemmas for established biorepositories containing data and samples from human subjects. Results: Despite much discussion in science policy literature about standardisation, the contextual aspects of biobanking are often overlooked. Using our engagement with GS we demonstrate the importance of local arrangements in the creation of a responsive ethical approach to biorepository governance. We argue that governance decisions regarding access to the biobank are intertwined with considerations about maintenance and viability at the local level. We show that in addition to the focus upon ever more universal and standardised practices, the local expertise gained in the management of such repositories must be supported. Conclusions: A commitment to open access in genomics research has found almost universal backing in science and health policy circles, but repositories of data and samples from human subjects may have to operate under managed access, to protect privacy, align with participant consent and ensure that the resource can be managed in a sustainable way. Data access committees need to be reflexive and flexible, to cope with changing technology and opportunities and threats from the wider data sharing environment. To understand these interactions also involves nurturing what is particular about the biobank in its local context. Keywords: Data access, Informed consent, Biobank, Research ethics, Genomics * Correspondence: [email protected] 1Science, Technology and Innovation Studies, University of Edinburgh, High School Yards, Edinburgh, Scotland EH1 1LZ, UK Full list of author information is available at the end of the article © The Author(s). 2017 Open Access This article is distributed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated. Heeney and Kerr BMC Medical Ethics (2017) 18:80 Page 2 of 11 Background Methods In policy and governance discussions around the shar- We engage with GS as a specific example of a biobank ing of genetic and genomic data, the rights of research and our “encounters with experience” [4] gained subjects are often balanced against the scientific bene- within the Generation Scotland Access Committee fits of allowing open access to biomedical data [1, 2]. (GSAC). Empirical studies of the perspectives of those Here, we follow an established tradition of including running biobanks point to the need to consider the empirical worked examples, in order to engage with contextual aspects of biobanking [11–13]. We hope to ethical issues raised by providing access to data stored further elucidate these contextual aspects by focusing within an existing biobank [3–5].Theaimistogobe- on the practices of the GSAC. The authors have both yond a simple opposition between being open and pro- had experience of working within the GSAC. Using tection of the autonomy and privacy of data subjects to GS as a case enables us to consider how a particular make a case for the inclusion of social and technical repository attempts to balance locally established gov- considerations in assessing what is ethical. We seek to ernance and institutional and research relationships address a gap in discussion in scientific, law and policy with the imperative to share data as openly as pos- arenas about standardisation [6, 7] by focusing on the sible. Through GS we explore the entwined practical contextual aspects of biobanking, which include the and ethical challenges around data sharing for existing will and ability to sustain the resource [8]. We will con- repositories [14]. By situating the ethics of access via sider Generation Scotland (GS) [9] as one context in examples arising in an active biobank, the aim is to which the global policy agenda of open access meets ensure that our discussion goes beyond considerations local issues. This raises not only questions around eth- of the “what if” type, which for example balance future ics and governance, which have been a focus of much health benefits against potential privacy risk questions of the discussion around access, but also questions of for an imagined future [15]. sustainability. GS is a genomics research biobank initi- We reflect upon the processes within GS through ated with a Scottish Higher Education Funding Council which requests for data access are handled. This will grant between 2001 and 2004 and supported by the include considering how the Access Committee must Chief Scientist Office of the Scottish Government from deal creatively and responsively with issues not fore- 2005 to 2014 (www.generationscotland.org). Participant seen when the repository was first set up and as a con- recruitment and collection of data from the 24,000 plus sequence, which may challenge existing governance participants began in 2006 and a GS infrastructure con- arrangements [16]. Therefore, we present examples of tinues to exist and manage access to a repository more the decision-making process of the GSAC in order to than a decade later. At the time of its creation Gener- consider how changes in the global data sharing and ation Scotland was described as: a “large, family-based governance environment, as well as internal changes intensively-phenotyped cohort recruited from the gen- to the resource, raise ethical questions. It is in the eral population across Scotland, as a resource for study- context of the GSAC that the wider policy field, is ne- ing the genetics of health areas of current and gotiated in relation to the characteristics of GS. Devel- projected public health importance” [10]. opments within the biobank and the data sharing The period of the early 2000s saw genetic biobanks environment more generally can raise ethical di- and repositories of various sorts created with the aim of lemmas even if the consent obtained was compara- ensuring a greater openness to data sharing. Generally, tively broad. ‘While in an unproblematised situation, biobanks or repositories hold both genetic data and material objects are seamlessly woven into every day phenotypic data sourced from research clinics and often practice - family pedigrees are produced, blood sam- also eHealth records. UK Biobank and Generation ples are taken, medical records are filed away etc. In Scotland were intended to be resources with minimal re- some cases the movement of these material objects strictions to reuse [8]. Data and sample repositories such into different physical locations, or even the particu- as GS were a manifestation of a growing commitment larity of their arrangement or configuration, can serve coming from science policy actors, including funders, to to problematize those practices’ [17]. We argue that promote data sharing and access to a wide range of data sharing raises issues relating to the role of the re- users. In what follows, we consider the specific charac- pository in future governance and ethical oversight teristics of the GS repository in shaping its data access and ask how expectations and preferences of partici- practices in light of the UK data sharing policy environ- pants will be interpreted in future scenarios, for ex- ment. We will use our interaction with GS to explore in ample within consortia [18]. Whilst issues of particular the issues of sustainability and evolution of sustainability could be viewed as separate from ethical the biobank's content in relation to ethical decision mak- and governance considerations, we aim to show that ing around access. they are inseparable in relation to access [19]. Heeney and Kerr BMC Medical Ethics (2017) 18:80 Page 3 of 11 Results (CSO) of the Scottish Government, for an initial period of Generation Scotland (GS) 3 years, following the completion of recruitment (the man- The GS Scottish Family Health Study was designed to agement structure of GS is illustrated in Fig. 1). Currently, provide a research resource,
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