http://www.fao.org/about/meetings/wgs-on-food-safety-management/en/ Strengthening data sharing for public health: ethical, legal and political issues. Presentation from the Technical Meeting on the impact of Whole Genome Sequencing (WGS) on food safety management and GMI-9, 23-25 May 2016, Rome, Italy.

1. Strengthening data sharing for public health:
ethical, legal and political issues
Michael Edelstein, Consultant Research Fellow
Centre for Global Health Security, Chatham House
@epi_michael
GMI9 Conference , 23-25 May 2016

2. 2
Overview
• Barriers to data sharing
• Data sharing: creating the right environment and
achieving good practice
• Making data sharing the norm
Chatham House | The Royal Institute of International Affairs

3. 3
Sharing public health surveillance data
• Sharing data improves public health
• Health implications of not sharing
• Sharing public health surveillance data is not the
norm
• Six main barrier categories
• Technical
• Legal
• Ethical
• Political
• Motivational
• Economic
Chatham House | The Royal Institute of International Affairs

4. Chatham House | The Royal Institute
of International Affairs
4
Ethics issues
• Lack of reciprocity and shared benefits
• H5N1 specimens in Indonesia
• Privacy and confidentiality
• Lack of proportionality, data misuse
• Data harvesting

5. Chatham House | The Royal Institute
of International Affairs
5
Legal issues
• Few global legal frameworks
• IHR
• Complex legal landscape
• National vs Regional vs Global
• Used as an excuse not to share
• One-sided agreements

6. Chatham House | The Royal Institute
of International Affairs
6
Political issues
• Perceived political, economic risk
• Risk-averse policies
• Few incentives

7. Chatham House | The Royal Institute of International Affairs 7
Strengthening Data Sharing for Public Health
• Providing guidance to create the right
environment and achieve good practice
• Targeting three stakeholder groups:
• Data producers
• Data users
• Data facilitators
• High-level and context-specific guidance

8. 8
Work to date
• Briefing papers
• Barriers and solutions
• Lessons from other sectors
• Strategic round tables
• Thematic round tables
• Legal, Ethics, standards, DDD
• Regional round tables
• Asia, Africa
• Guidance expected October 2016
• Online and hard copy
Chatham House | The Royal Institute of International Affairs

9. 9
Outputs
High-level principles for data sharing
1. Articulating the value proposition
2. Planning for data sharing
3. Ensuring high-quality data production
4. Collaborating in creating data-sharing agreements
5. Building trust and being consistent
6. Understanding the context-specific legal implications
7. Monitoring and evaluating progress
Chatham House | The Royal Institute of International Affairs

10. 10
Ethics
• Public health purpose and data protection
• Sharing benefits
• Global ethical framework
• Ethical principles for data sharing
1. Social Value
2. Respect
3. Justice
4. Transparency
Chatham House | The Royal Institute of International Affairs

11. 11
Guide to Developing Data-Sharing Agreements
• Legal instruments are tools, not barriers
• Context specific
• Two-way, equitable agreements
• Guide to Developing Data-Sharing Agreements
• Legally vs non legally binding (MoU)
• Addresses ethical barriers including shared benefits
• Model agreement to provide necessary language
Chatham House | The Royal Institute of International Affairs

12. 12
Public Health Surveillance: A Call to Share Data
Chatham House | The Royal Institute of International Affairs
• “The norm should be for data to be accessible in a timely
manner for public health action while taking appropriate
steps to safeguard the privacy of individuals and other
legitimate public interests”
• “The consequences of making a decision to withhold data
can be critical, and those considering such a decision
must be ready to justify their actions”
• “Unacceptable for organizations to claim ownership of,
and restrict access to, public health surveillance data
when that would decrease potential health benefits
derived from these data”

13. 13
Public Health Surveillance: A Call to Share Data
Chatham House | The Royal Institute of International Affairs
• We call on stakeholders to commit to the
following:
• To share public health surveillance data by default where a
public health need is identified, in a timeframe necessary for
public health decision-making and to the highest standards they
can achieve.
• To use public health surveillance data responsibly, with the
intention of protecting and improving the health of the
population and in accordance with the agreed terms
• To articulate the value proposition for sharing in an explicit,
clear, and accessible way - the benefits should be evident to all
• To ensure that public health surveillance data are shared with as
few restrictions as possible, and with a commitment to principles
of social beneficence, respect, justice and transparency.

14. Thank you
Chatham House | The Royal Institute of International Affairs
Prof David R Harper
Senior Consulting Fellow, Centre on Global Health Security
Matthew Brack
Project Manager, Centre on Global Health Security
Asha Herten-Crabb
Project Coordinator, Centre on Global Health Security