Fraunhofer-Institut für Produktionsanlagen und Konstruktionstechnik IPK

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Ethical implications of digitised medical and biometric data

2011 , Siew, S.-T. , Mohd-Nor, R. , Swartzman, S. , Cox, B. , Lim, T. , Menevidis, Z. , Yeo, A.W.

In this paper, ethical implications of data collection, use and retention of medical and biometric data in biometrics and medical applications are identified. These implications are discussed in the context of five main ethical principles - privacy, confidentiality, security, property and ownership, and reliability and trustworthiness. In addition, to illustrate unethical uses of medical and biometric data, cases of misuse are described. Our research contributes to the European Union's FP7 ETHICAL project, which aims to promote international debate on ethical implications of data collection, use, and retention of biometric and medical data.

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Ethical implications of the global use of digitised biomedical and biometric data. Workshop Proceedings

2011 , Menevidis, Z. , Schug, S.H.

In the light of a lack of convergence at the international level at this point in time, the ETHICAL project seeks a first international response to these issues in the development of a Code of Conduct. Indeed, the development and adherence to such a Code is possibly one of the few policy options we could employ and this is why I welcome the outline for such a Code developed in the framework of this project. I want to congratulate all partners with the completion of this project. The project did not want to employ abstract ethics, but instead, worked interdisciplinary, and brought people technical and ethical expertise together. Moreover, the project was exemplary by integrating international partners from the Ukraine, Chile and Malaysia into a consortium which also consisted of various research organisations and SME's from Europe. Thus, the project was not only a success in terms of its outcome, but also in terms of its process. Dr. Dr.phil. René Von Schomberg DG Research European Commission

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The Virtual Physiological Human (VPH) White Paper

2010 , Cox, B. , Hatzaras, K. , Menevidis, Z. , Mitrou, E. , Lange, M. , Chini, P.

The Virtual Physiological Human (VPH) is a methodological and technological framework that aims to integrate biomedical research conducted at different scales of the human body's physiology, and contribute to the growth of personalised illness prediction and treatment. The core of this framework comprises model and physiological data repositories, methods, tools and services available to researchers. The two main research challenges the VPH community aims to address are the development of human physiology models that integrate processes at molecular, cell, tissue, and organ level, and of datasets that support the operation of these models. To meet these challenges, key requirements this community has identified include the growth and management of populated physiological databases, and the development of standards to encode and validate models, thus enabling their use in the VPH, genetic and pharmaceutical research communities.

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RADICAL-VPH-Security/Privacy-Questionnaire

2009 , Chini, P. , Cox, B. , Giambene, G. , Guariglia, C. , Hadzic, S. , Hatzaras, K. , Kolios, A. , Lange, M. , Menevidis, Z. , Mitrou, L. , Smagas, K. , Tavlaki, E.

This questionnaire deals with the Virtual Physiological Human (VPH) that is a methodological and technological framework for the investigations of the human body as a single system. In particular, VPH entails computational and Information & Communication Technology (ICT)-based tools for collecting clinical and laboratory observations, as well as for creating large collections of models that can be interconnected to simulate human anatomy, physiology and pathology, thus permitting scientists and medical practitioners a better knowledge of the real physiological human. VPH is a multi-disciplinary field aimed at developing quantitative, integrative and predictive models that describe human life from conception to death and from genes to the whole organism.

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Code of conduct for FP7 researchers on medical and biometric data privacy

2011 , Menevidis, Z. , Swartzman, S. , Stylianidis, S.

Ethical implications of data collection, use and retention affect society both socially and financially. These impacts have been identified and categorised by the ETHICAL Consortium, which also studied the state of the art approaches and skills and analyzed moderated dialogue and consultation results, leading to the development of ethical recommendations for EC policy directives. Although EC DG of Research has put forth several measures, regulations and mechanisms for the preservation of ethical requirements and accompanying commitments, studies and debates over and over attest that additional articulation and implementation of a code of conduct for FP7 researchers are necessary, in order to provide guidance on data privacy in practical terms in order to minimize misconduct and misuse. Taking into account the findings from initial ETHICAL studies that are presented in this workshop documentation the ETHICAL Consortium made an attempt to meet this need by providing recommendations for a code of conduct and implementation measures for FP7 researchers with this report on data collection, use and retention in medical and biometric applications. This particular work focuses on providing a practical tool for usage during proposal submission and contract conclusion as well as during the implementation of FP7 projects, which will act as a toolkit for the relevant activities to be implemented, measured and evaluated.

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D3.2 - v2 VPH S&P User Requirements and ICT Challenges - integrated edition of D3.1, D3.2 and D4.1

2010 , Giambene, G. , Chini, P. , Hadzic, S. , Cox, B. , Hatzaras, K. , Menevidis, Z. , Mitrou, E. , Lange, M. , Schug, S. , Stylianidis, S.

This deliverable starts with a brief review of the projects that have been identified as background for the VPH framework. It then presents the methodology adopted for the elicitation of user S&P requirements by considering several categories of users intended as VPH stakeholders, the composition of a respondent sample of organisations, and the data collection methods. Consultation of stakeholders has been carried out by means of questionnaires of three different types: (i) a first pilot questionnaire (for identifying some main S&P topics), (ii) a full Web questionnaire for massive access (for statistics purposes), and (iii) a legal questionnaire (for contacting EU national data protection authorities). In addition to this, requirements have been elicited through interviews based on an interview guide) and in panel sessions in two workshops organised by RADICAL project.

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Publication

Ethical implications of digitised medical and biometric data

2010 , Siew, S.-T. , Mohd-Nor, R. , Swartzman, S. , Lim, T. , Cox, B. , Yeo, A.W. , Menevidis, Z.

In this paper, ethical implications of data collection, use and retention of medical and biometric data in biometrics and medical applications are identified. These implications are discussed in the context of five main ethical principles - privacy, confidentiality, security, property and ownership, and reliability and trustworthiness. In addition, to illustrate unethical uses of medical and biometric data, cases of misuse are described. Our research contributes to the European Union's FP7 ETHICAL project, which aims to promote international debate on ethical implications of data collection, use, and retention of biometric and medical data.

View
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Publication

Code of conduct for FP7 researchers on medical and biometric data privacy

2011 , Menevidis, Z. , Swartzman, S. , Stylianidis, S.

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Publication

Promoting international debate on ethical implications of data collection, use and retention for biometric and medical applications

2010 , Menevidis, Z.

Ethical implications of data collection, use and retention affect society both socially and financially. These impacts have been identified and categorised by the ETHICAL Consortium, which also studied the state of the art approaches and skills and analyzed moderated dialogue and consultation results, leading to the development of ethical recommendations for EC policy directives.

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Publication

Launching a framework of security and privacy in the VPH

2010 , Cox, B. , Hatzaras, K. , Giambene, G. , Chini, P. , Mitrou, L. , Stylianidis, S. , Menevidis, Z.

The aims of this deliverable are to identify the societal needs that should be considered in the implementation of IS policies in VPH research (Virtual Physiological Human), to benchmark the approaches, tools and techniques of VPH research projects for utilising personal health and other information in a secure manner, to identify specific security and privacy risks in the VPH that may appropriately be addressed through public policy and technology, and to put together a framework of minimum IS requirements in VPH research.

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