ethical and legal issues in making research data open

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!