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Ethical Principles

Sharing public health surveillance data beyond borders requires careful consideration of the inherent ethical issues. This project has identified four key ethical principles that should underlie any data sharing agreement to ensure it is equitable, just and ultimately successful. Adoption of the seven core principles for successful data sharing, set out in this guide, also implies adoption of these four ethical principles. The ethical principles are critical to any and all data sharing activities and will help ensure that all parties are treated equitably and that the sharing is carried out in a consistent, efficient and beneficial manner for all those involved.

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Social value

Social value refers to the wider financial and non-financial impacts of the data sharing activity. The social value of sharing data can include, but is not limited to, enhancing the wellbeing of the communities from which the data originate, knowledge generation, knowledge dissemination, education, training and capacity strengthening, and contributions to the expansion of a field of inquiry. Sharing public health surveillance data should serve a public health purpose and should contribute to social value by helping to enhance the public health of individuals and communities. Any benefits arising from data sharing should be shared equitably with the community from which the data originate.

Respect

Respect is the due regard for the rights or wishes of others. When using data, each individual has a responsibility to recognize the need to balance risks and benefits. They should respect the individuals and communities from which the data originate, as well as those providing the data. Each individual using the data should be considered a steward of the data and is expected to be accountable for their protection and appropriate use.

Justice

In the context of public health surveillance data sharing, justice refers to fairness and the equitable distribution of risks and benefits associated with a data sharing activity. Data sharing must be an equitable partnership between data provider and data recipient, and should be proportional to the intended public health purpose. Parties to a data sharing agreement must be treated equitably by each other and by any data sharing facilitator, with a fair distribution of benefits and burdens. Parties should also have equitable access to the data and the capacity to use them.

Transparency

Transparency is openness in decision-making and actions, including both the initial request to share surveillance data and subsequent use of the data. Those involved in the data sharing must remain accountable throughout, through ongoing monitoring, learning and evaluation. Reporting should be transparent so that all parties are adequately informed and able to make decisions in the interest of public health throughout the data sharing process.