ethical and legal issues in making research data open
TRANSCRIPT
ERC workshop: Ethical and legal
issues
Mark Taylor
Overview
• Ethical issues
• Legal issues
• Solutions
• Resources
Fighting Malaria
Ethics of open research data
When it goes wrong
• Re-identification and de-anonymisation
Ethical concerns – Part I
• Human subject research– Privacy and confidentiality– Consent
Questionable uses of data
Ethical concerns – Part II
• Unintended consequences and misinterpretation• Publicly available data: social media• Dual use
Human Genome Project
Bermuda principles
1. Automatic release of sequence assemblies larger than 1 kb (preferably within 24 hours).
2. Immediate publication of finished annotated sequences.
3. Aim to make the entire sequence freely available in the public domain for both research and development in order to maximise benefits to society.
Legal issues
• Intellectual Property Rights (IPR)
• Data protection
• Open Access legislation
Intellectual Property Rights (IPR)
• Copyright
• Trade Secret
• Database rights
Licenses
• Different kinds of licenses
• Creative Commons– CC-BY-ND-NC
Data protection
• Personal data
• Sensitive personal data
• Pseudonymised data
Eight principle of data protection
• Fair and lawful
• Etc.
How to meet data protection directive
• Personal genome project (US and UK)
Open Access legislation
• Public sector information
• National legislation
Solutions
• Licensing• Editorial review• Access control/management
– Committees– Ethics board– Participants as partners
• “Soft law” measures – Disciplinary guidelines – Codes of conduct
• Openness
Resources
• Ethics: – http://www.data-archive.ac.uk/create-manage/consent-ethics/res
ources– http://www.ands.org.au/guides/ethics-working-level.html– EDINA: http://datalib.edina.ac.uk/mantra/
• Legal: – JISC: http://www.jisclegal.ac.uk– RDNL: http://datasupport.researchdata.nl/en/start-de-cursus/v-
legislation-and-policy/– FOSTER:
https://www.fosteropenscience.eu/foster-taxonomy/legal-issues– DMPTool
Thank you!