Ethics & Privacy Considerations in PANDEM-2
What is ethics?
Ethics is concerned with moral issues, values and principles, as well as normative practices that are recognized in the daily life of individuals. The European community identity is built on ethical values such as human autonomy, dignity, fairness, equality and non-discrimination. For instance, the principle of autonomy relates to an individuals’ ability to make decisions on their own, while dignity is defined as being worthy of respect in virtue of being human.
What Ethical Issues Need to be Considered in PANDEM-2?
The following questions should be considered by the consortium in the context of pandemic planning:
- To what extent do governments have an obligation to care for their most vulnerable residents?
- How much of an individual’s autonomy can be curtailed by a government even for the individual’s own good or the overall wellbeing of society?
- Should everyone remain housebound to ensure a limited number of people do not get infected and die from an infectious disease outbreak?
- Should everyone be allowed to live their lives as normal with the consequences of their actions potentially fatal for a limited number of vulnerable people?
- Are lockdown restrictions having a disproportionate impact on groups that are more vulnerable?
- Are lockdown restrictions negatively impacting an individual’s dignity by influencing their income, employment and access to food?
What is privacy & data protection?
Privacy can be seen as an umbrella term that safeguards many ethical and societal values that are conceptually distinct but still related in various ways. There are seven types of privacy: the person; behaviour & action; communication; data & image; thoughts & feelings; location & space; association.
Data protection covers some aspects of privacy, however, it does not fully cover all seven aspects of privacy as presented above. Furthermore, in terms of data protection, it is necessary that all partners comply with the General Data Protection Regulation 2016/679 (GDPR), which outlines how an individual’s personal data should be safeguarded in the European Union.
How will Privacy & Ethical issues be addressed?
Trilateral are responsible for reviewing the partners’ data collection plan to identify any data protection risks and to propose mitigation strategies. In addition, information and consent sheet templates are generated by Trilateral for partners to amend accordingly for project activities with human subjects, which ensures GDPR compliance.
A comprehensive privacy, social and ethical impact assessment of the PANDEM-2 database, situational awareness and pandemic planning dashboard will be conducted by Trilateral. This impact assessment is a process that contributes to informed decision-making and protection of societal concerns within the project, while minimising the privacy and ethical harms for individuals, organisations and society. The impact assessment incorporates a systematic process to mapping information flows, mapping and assessing risks, and providing a set of recommendations for technology developers to take into account during the design stage of a system.
Who are Trilateral Research
Trilateral Research is a UK and IE-based enterprise, founded in 2004. It specialises in applied research and the provision of policy, regulatory and certification advice and recommendations for new technologies, processes, policies and systems. Trilateral take a rigorous and responsible approach to research and development, underpinned by an emphasis on privacy and security by design in research, data science, and technology development. Trilateral research impacts a variety of disciplines, all focused on enhancing societal well-being, including (but not limited to) security and human rights, crisis and disaster management, and responsible digital transformation.
Trilateral Research Role in PANDEM-2
Trilateral are involved in numerous work packages of the PANDEM-2 project. Trilateral’s main role is to bring awareness to the consortium on the privacy, ethical and societal issues that need to be considered when developing technological solutions, while providing an understanding of these issues that are or may become active in the PANDEM-2 project. As experts in crisis communication, Trilateral will also contribute to the development of pandemic communication guidelines by researching the current state of play and lessons learnt from previous pandemics.
Author: Dr. Stephanie Rahill, Trilateral Research