Information Systems for Federated Biobanks

Eder, Johann; Dabringer, Claus; Schicho, Michaela; Stark, Konrad

doi:10.1007/978-3-642-03722-1_7

Cited by 26 publications

(14 citation statements)

References 30 publications

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“…Although bioinformaticians are still improving their attempts to k-anonymize [26,27] and l-diversify [28] datasets ('k' and 'l' are spaceholders, specifying the minimal, necessary number of data twins, which prevent sensitive data from being directly linkable to individuals, to be created by the system), some basic tensions are inescapable despite the introduction of ever more sophisticated technical fixes. It is at least not feasible -if not entirely impossible -to sever all the links between potentially identifiable data, because it is exactly these sort of links that enable biobank research to uncover the complex, hidden factors that influence health or disease outcomes.…”

Section: Towards the New Governance Of Consent And Privacy In Biobank Rmentioning

confidence: 99%

Biobank Governance In the Post-Genomic Age

Gottweis

Lauss²

2010

Personalized Medicine

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Biobank governance is about the regulation of the relationship between individual citizens, society and biobanks. Its key agenda is to link society, citizens and biobanks with respect to issues of consent, privacy, ownership, access and benefit sharing. With the transformation of biobank research from local/national activities towards transnational projects and the emergence of post-genomic medical research, biobanks need to establish novel governance structures. We consider governance solutions that focus on 'bioethical-theoretical' arguments to be of only limited value in this context. By contrast, we think the key lies in developing participatory arrangements that are responsive to the views of patients and 'lay people', and also operate on a transnational level. The social-political and communicative competence of biobank infrastructures must be improved, thereby assuring the long-term legitimacy and commitment to these often highly expensive projects from a large variety of different stakeholders over the decades.

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Section: Towards the New Governance Of Consent And Privacy In Biobank Rmentioning

confidence: 99%

Biobank Governance In the Post-Genomic Age

Gottweis

Lauss²

2010

Personalized Medicine

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“…15,16,17,22,23 While several steps-in particular, statistical ones 16,24 -can be taken to improve privacy by, e.g., strengthening anonymity, at the same time such approaches hinder the usefulness of data for studies in epidemiology, biomedicine, etc. due to the fact that information is actually retained within the organization holding the data and not released to the researcher on the outside, potentially hiding important features from scrutiny.…”

Section: Privacy By Design Via Secure Computations In Bioinformatics mentioning

confidence: 99%

“…Here we will focus on the question: Which data can be passed to a requesting researcher and when to prohibit the disclosure of personal data, 14 an important aspect for the design of information systems for biobanks. 15 We analyze the process in preparing and performing a biomedical study and discuss the appropriate measures for each step.…”

Section: Information Technology Solutions To Reconcile Research Needsmentioning

confidence: 99%

Towards Biobank Privacy Regimes in Responsible Innovation Societies: ESBB Conference in Granada 2012

Lauss

Schröder²,

Eder³

et al. 2013

Biopreservation and Biobanking

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The creation of socially and technically robust biobank privacy regimes presupposes knowledge of and compliance with legal rules, professional standards of the biomedical community, and state-of-the-art data safety and security measures. The strategies in privacy management and data protection presented in this review show a trend that goes beyond searching for compromises or efforts of balancing scientific demands for efficiency and societal demands for effective privacy regimes. They focus on developing synergies that facilitate cooperative use of biomaterials and data and enhance sample search efficiency for researchers on the one hand, and protect rights and interests of donors and citizens on the other hand. Among the issues covered are: a) ethical sensitivities and public perceptions on privacy in biobanking b) tools and procedures that allow maintenance of the rights and dignity of donors, without jeopardizing legitimate information needs of researchers and autonomy of biobanks, and c) a privacy sensitive framework for sharing of data and biomaterials in the research context.

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“…Creating a network of federated biobanks [12,31] requires the integration of heterogenous, autonomous, individually developed biobank databases [16,17]. Experiments based on data of (unknowingly) poor quality yield incorrect results [35].…”

Section: Introductionmentioning

confidence: 99%

“…Biobanks are very valuable resources for life science research providing material and data for biomedical research projects and studies. Currently, great efforts are undertaken to link biobanks creating an interconnected federated resource for biomedical research [12,36].…”

Section: Introductionmentioning

confidence: 99%

Efficient Projection of Ontologies

2014

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Abstract. In collaborative and interoperable information systems it is frequently necessary to export a subset of an ontology, in particular to export all instances and axioms subsumed by a shared domain ontology. Technically this can be realized by projecting the Abox axioms of the private instances to the vocabulary of the shared ontology using a reasoner. We show that the direct application of this method results in a very redundant export. Therefore, we propose methods to generate a much smaller equivalent export in an efficient way. These methods are based on a deep analysis of properties of axiom sets that can be used to efficiently filter redundancies during the export process and provide methods to further minimize redundancies in the result. We evaluate the performance and the degree of minimality that can be reached with our approach with standard benchmarking ontologies with large Aboxes and a use case of the bio-medical domain.

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Information Systems for Federated Biobanks

Cited by 26 publications

References 30 publications

Biobank Governance In the Post-Genomic Age

Biobank Governance In the Post-Genomic Age

Towards Biobank Privacy Regimes in Responsible Innovation Societies: ESBB Conference in Granada 2012

Efficient Projection of Ontologies

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