Workshop on Ethical, Legal and Social Implications ELSI
Venue: ICL; Organiser: ICL; Date: 20th November 2015
Patient and research subject data is very sensitive, and it is paramount to establish a robust governance framework for overall information management including sensitive data. The PhenoMeNal e-infrastructure will be able to cope with data generated from comprehensive clinical, genotypic, ‘omics and analytic sources including medical records, electronic health records, clinical measurements, genotypic data, phenotypic and metabolomics data from tissue and biofluid analysis, image and pathology data. Primarily, all data collected and held within the project will comply with all local laws, regulations and ethics. All personal information will be processed in accordance with accepted Data Protection Principles. Responsibility for data will be with the host institution/data provider.
In accordance with the above Ethical, Legal and Social Implications (ELSI) requirements,a workshop on best practices in handling sensitive human data was organised. The workshop included some lightning presentations around the themes of ethics, data security, clinical phenotyping, legal frameworks and European data sharing efforts. Clear ways forward were identified to aid the implementation of state of the art privacy and ethics standards within the PhenoMeNal infrastructure.
Target Audience: Software developers, bioinformaticians, ethicists
- Understanding the policies around privacy and ethics
- Identify models to aid the implementation of state of the art privacy and ethics within the PhenoMenal infrastructure