133 research outputs found

    Anonymization Techniques for Privacy-preserving Process Mining

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    Process Mining ermöglicht die Analyse von Event Logs. Jede Aktivität ist durch ein Event in einem Trace recorded, welcher jeweils einer Prozessinstanz entspricht. Traces können sensible Daten, z.B. über Patienten enthalten. Diese Dissertation adressiert Datenschutzrisiken für Trace Daten und Process Mining. Durch eine empirische Studie zum Re-Identifikations Risiko in öffentlichen Event Logs wird die hohe Gefahr aufgezeigt, aber auch weitere Risiken sind von Bedeutung. Anonymisierung ist entscheidend um Risiken zu adressieren, aber schwierig weil gleichzeitig die Verhaltensaspekte des Event Logs erhalten werden sollen. Dies führt zu einem Privacy-Utility-Trade-Off. Dieser wird durch neue Algorithmen wie SaCoFa und SaPa angegangen, die Differential Privacy garantieren und gleichzeitig Utility erhalten. PRIPEL ergänzt die anonymiserten Control-flows um Kontextinformationen und ermöglich so die Veröffentlichung von vollständigen, geschützten Logs. Mit PRETSA wird eine Algorithmenfamilie vorgestellt, die k-anonymity garantiert. Dafür werden privacy-verletztende Traces miteinander vereint, mit dem Ziel ein möglichst syntaktisch ähnliches Log zu erzeugen. Durch Experimente kann eine bessere Utility-Erhaltung gegenüber existierenden Lösungen aufgezeigt werden.Process mining analyzes business processes using event logs. Each activity execution is recorded as an event in a trace, representing a process instance's behavior. Traces often hold sensitive info like patient data. This thesis addresses privacy concerns arising from trace data and process mining. A re-identification risk study on public event logs reveals high risk, but other threats exist. Anonymization is vital to address these issues, yet challenging due to preserving behavioral aspects for analysis, leading to a privacy-utility trade-off. New algorithms, SaCoFa and SaPa, are introduced for trace anonymization using noise for differential privacy while maintaining utility. PRIPEL supplements anonymized control flows with trace contextual info for complete protected logs. For k-anonymity, the PRETSA algorithm family merges privacy-violating traces based on a prefix representation of the event log, maintaining syntactic similarity. Empirical evaluations demonstrate utility improvements over existing techniques

    The ethical and legal regulation of human tissue and biobank research in Europe - Proceedings of the Tiss.EU Project

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    Human tissue and biobank research is of increasing importance for understanding the causes of widespread diseases and developing effective therapies. However, while the success of biobank research depends on the availability of a large number of samples and the consolidation of collections across country borders is very desirable from the perspective of researchers, the legal and ethical requirements for the procurement, storage and use of human tissue samples are rather heterogeneous across different countries. Moreover, the lack of comprehensive supranational regulation on human tissue and biobanking can be seen as posing a serious threat to transnational biomedical research. Against this background, it was one of the aims of the EU-funded Tiss.EU project (“Evaluation of Legislation and Related Guidelines on the Procurement, Storage and Transfer of Human Tissues and Cells in the European Union – an Evidence-Based Impact Analysis”) to analyse the ethical and legal regulation of human tissue and biobank research across the 27 European Member States plus Switzerland. The results of nine international workshops and three conferences are gathered in this volume. While the country reports evaluate the implementation of ethical and legal guidelines at a national level, point out their strengths and deficits, and, where required, create an evidence base for the revision of said legislation, the conference reports address more general ethical and legal issues in this field. The volume is completed by a final presentation of project’s results

    Access to human genetic resources: materials from a transnational stakeholder dialogue

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    "This report summarizes deliberations over the Access to Human Genetic Resources held during a stakeholder dialogue process launched by the World Business Council for Sustainable Development (WBCSD) in 2001/2002. The dialogue process was designed to explore options of companies to address contested issues of intellectual property in their business strategies. To that end, companies were exposed to the concerns of stakeholders and urged to define responses to these concerns. The project involved major companies and transnational non-governmental organizations as well as renowned experts in the field of intellectual property rights. This paper briefly sketches the project and the process of the dialogue. The products of the process are the opinions, both concurring and dissenting, that the participants reached on the access to human genetic resources, subsumed in the final report to the WBCSD that emerged from the project. This paper also reviews documents (Circulars) from the proceedings, which further illustrate the dynamics of the deliberations, and the range and direction of arguments exchanged by the participants." (author's abstract)"Das Diskussionspapier stellt die Ergebnisse dar, die im Rahmen eines vom World Business Council on Sustainable Development (WBCSD) initiierten Stakeholder Dialogs zum Thema Zugang zur humangenetischen Ressourcen erreicht worden sind. Ziel des Dialogs war es zu untersuchen, welche Optionen Unternehmen haben, öffentlichen Kritiken am geltenden Regime des geistigen Eigentums durch Anpassung ihrer Strategien Rechnung zu tragen. Beteiligt waren an dem Dialog Vertreter von großen pharmazeutischen Firmen und von transnational operierenden Nichtregierungsorganisationen, sowie Experten des Rechts des geistigen Eigentums. Das Diskussionspapier skizziert Charakter und Verlauf des Dialogverfahrens. Im Zentrum stehen die Ergebnisse zum Thema Zugang zur humangenetischen Ressourcen, wie sie in den vom World Business Council herausgegebenen Endberichts des Stakeholder Dialogs eingegangen sind - mit der Kennzeichnung der jeweils übereinstimmenden oder abweichenden Positionen der Teilnehmer. Es folgt eine kurze Diskussion dieser Ergebnisse. Im Anhang werden zentrale Dokumente des Verfahrens (Circulars) abgedruckt, die Einblick geben in die Dynamik der Verhandlungen und die Reichweite und Richtung der von den Teilnehmern ausgetauschten Argumente." (Autorenreferat

    GDPR and Biobanking

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    This open access book focuses on the discrepancies in biobank research regulations that are among the most significant hurdles to effective research collaboration. The General Data Protection Regulation (GDPR) has established stringent requirements for the processing of health and genetic data, while simultaneously allowing considerable multi-level exceptions for the purposes of scientific research. In addition to directly applicable exceptions, the GDPR places the regulatory responsibility for further defining how the Member States strike a balance between the individuals' rights and the public interest in research within their national legal orders. Since Member States' approaches to the trade-off between data subjects' rights on the one hand, and appropriate safeguards on the other, differ according to their ethical and legal traditions, their data protection requirements for research also differ considerably. This study takes a comprehensive approach to determine how the GDPR affects regulatory regimes on the use of personal data in biobanking research, with a particular focus on the balance between individuals' rights, public interest and scientific research. In this regard, it has two main goals: first, to scrutinize the GDPR research regime, its objective and constitutive elements, the impact it has on biobanking, and its role in a changing EU landscape post-Brexit; and second, to examine how various exceptions have been operationalized nationally, and what challenges and opportunities this diversification entails. The book not only captures the complexity GDPR creates for biobanking, but also sheds light on various approaches to tackling the corresponding challenges. It offers the first comprehensive analysis of GDPR for biobanking, and the most up-to-date overview of the national biobank regulatory frameworks in Europe

    Bank on We the People: Why and How Public Engagement is Relevant to Biobanking

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    Biobanks emerged in the early 2000s and now facilitate scientific research through the provision of resources for research that requires a large scale of biospecimens and data. Biobank projects have also become intertwined with complicated socio-economic initiatives to boost economic development or to shape community identity. While legislators continue to debate the ethical and regulatory challenges associated with biobanks, the federal regulation over research involving human subjects, the Common Rule, is based on a traditional research model that fails to address the complex challenges unique to biobanking. Through an examination of the proposed revisions to the Common Rule concerning research using biospecimens and ethical controversies regarding informed consent, privacy, ownership, and benefit-sharing, this article highlights a participatory aspect of biobanking that calls for public engagement with respect to both ethics and norms. Many biobank projects try to appeal to a sense of civic engagement whereby citizens have rights as well as responsibilities with respect to participation in collaborative scientific projects. Domestic and international guidelines describe incorporating public engagement with biobanking as an essential means of protecting research participants and achieving good governance. International experiences with various approaches to public engagement have also proven that involving the general public is feasible. Moreover, the principle of democratic deliberation, which was proposed by the Presidential Commission for the Studies of Bioethical Issues to be a guiding principle for bioethics policy decisions further underscores the criticality of public engagement in biobanking
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