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Ethical Concerns in e-Science Projects Marina Jirotka, Steve Harris, Sharon Lloyd, Rob Procter

Ethical Concerns in e-Science Projects Marina Jirotka, Steve Harris, Sharon Lloyd, Rob Procter. Motivation. Privacy of information Access to medical data Use of medical data as test data Securing ethical approval in a multi-site project Designing technology to ‘fit’ organisational purposes

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Ethical Concerns in e-Science Projects Marina Jirotka, Steve Harris, Sharon Lloyd, Rob Procter

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  1. Ethical Concerns in e-Science Projects Marina Jirotka, Steve Harris, Sharon Lloyd, Rob Procter

  2. Motivation • Privacy of information • Access to medical data • Use of medical data as test data • Securing ethical approval in a multi-site project • Designing technology to ‘fit’ organisational purposes • Ownership of data

  3. Plan for Session 16.10 Introduction Marina Jirotka, University of Oxford 16.20 - 17.40 Presentations [15 mins + 5 mins questions each] 16.20 e-Science and ethical issues: a comparison with randomised clinical trials Steve Harris, University of Oxford 16.40 Ethical Issues in e-Science: The View From Clinical Genetics Jonathan Berg, University of Dundee 17.00 De-indentifying the EHR: building a resource for research Dipak Kalra, University College London 17.20 Making sense of the guidelines on sharing personal data Richard Ashcroft, Imperial College London 17.40 General Issues Marina Jirotka 17.45 Open Discussion 18.10 Close

  4. Objectives • Catalogue of ethical problems • Set of best practices and solutions • Proposed guidelines and procedures • Implications for future e-Science projects • project design and proposal writing • Implications for policy • ethical committees, NHS and government policy

  5. Issues • Use of retrospective data - implied consent insufficient • Use of personal data • Plan for prospective collection of informed consent • Anonymisation strategies • implications for future use of system • Ethical design must be inherent in database • Gaining ethical approval - MREC and LREC • Global considerations - multi-national projects?

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