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ERC workshop: Ethical and legal
issues
Mark Taylor
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Overview
• Ethical issues
• Legal issues
• Solutions
• Resources
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Fighting Malaria
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Ethics of open research data
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When it goes wrong
• Re-identification and de-anonymisation
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Ethical concerns – Part I
• Human subject research– Privacy and confidentiality– Consent
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Questionable uses of data
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Ethical concerns – Part II
• Unintended consequences and misinterpretation• Publicly available data: social media• Dual use
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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.
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Legal issues
• Intellectual Property Rights (IPR)
• Data protection
• Open Access legislation
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Intellectual Property Rights (IPR)
• Copyright
• Trade Secret
• Database rights
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Licenses
• Different kinds of licenses
• Creative Commons– CC-BY-ND-NC
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Data protection
• Personal data
• Sensitive personal data
• Pseudonymised data
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Eight principle of data protection
• Fair and lawful
• Etc.
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How to meet data protection directive
• Personal genome project (US and UK)
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Open Access legislation
• Public sector information
• National legislation
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Solutions
• Licensing• Editorial review• Access control/management
– Committees– Ethics board– Participants as partners
• “Soft law” measures – Disciplinary guidelines – Codes of conduct
• Openness
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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
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Thank you!