Oxford Internet Institute, Monday April 27, 2015 (closed workshop)
Part of the ‘Ethics of Biomedical Big Data‘ project, this workshop will bring together expertise from academia, medicine and industry to address emerging challenges in the field, and the requirements for a European framework for ethical usage of biomedical Big Data.
In biomedical research, the analysis of large datasets (Big Data) has become a major driver of innovation and success. Epidemiology, public health and infectious diseases research, biobanks, genomic and microbiome sequencing are already deeply affected by Biomedical Big Data, alongside emerging forms of commercial collection and self-curation of medical data (e.g. health ‘apps’, online health records, wearable computing). However, the collection, storage and analysis of this data potentially raises serious ethical problems, which may threaten the huge opportunities it offers. Recent movement from the NHS to further share patient data (care.data) and related data sharing throughout Europe make addressing these problems in the near term very pressing. The workshop aims to address questions such as:
- What are the unique ethical challenges of biomedical Big Data?
- What does the ethical landscape look like beyond issues of informed consent and privacy?
- How should collection, sharing and re-uses of biomedical Big Data be regulated?
- Which existing and prospective Big Data practices are particularly problematic or require further analysis/regulation?
- How can we develop an ethically sound framework for using Big Data in biomedical researchas well as commercial applications at a European level?
- What lessons can be learnt from previous or different experiences in applied ethics that could help in dealing with the new challenges posed by Big Data in biomedical research?