Radio evolution: conference proceedings

Fundação para a Ciência e a Tecnologia (FCT

Precision health approaches: ethical considerations for health data processing

This thesis provides insights and recommendations on some of the most crucial elements necessary for an effective, legally and ethically sound implementation of precision health approaches in the Swiss context (and beyond), specifically for precision medicine and precision public health. In this regard, this thesis recognizes the centrality of data in these two abovementioned domains, and the ethical and scientific imperative of ensuring the widespread and responsible sharing of high quality health data between the numerous stakeholders involved in healthcare, public health and associated research domains. It also recognizes the need to protect not only the interests of data subjects but also those of data processors. Indeed, it is only through a comprehensive assessment of the needs and expectations of each and every one regarding data sharing activities that sustainable solutions to known ethical and scientific conundrums can be devised and implemented. In addition, the included chapters in this thesis emphasize recommending solutions that could be convincingly applied to real world problems, with the ultimate objective of having a concrete impact on clinical and public health practice and policies, including research activities. Indeed, the strengths of this thesis reside in a careful and in-depth interdisciplinary assessment of the different issues at stake in precision health approaches, with the elaboration of the least disruptive solutions (as far as possible) and recommendations for an easy evaluation and subsequent adoption by relevant stakeholders active in these two domains. This thesis has three main objectives, namely (i) to investigate and identify factors influencing the processing of health data in the Swiss context and suggest some potential solutions and recommendations. A better understanding of these factors is paramount for an effective implementation of precision health approaches given their strong dependence on high quality and easily accessible health datasets; (ii) to identify and explore the ethical, legal and social issues (ELSI) of innovative participatory disease surveillance systems – also falling under precision health approaches – and how research ethics are coping within this field. In addition, this thesis aims to strengthen the ethical approaches currently used to cater for these ELSIs by providing a robust ethical framework; and lastly, (iii) to investigate how precision health approaches might not be able to achieve their social justice and health equity goals, if the impact of structural racism on these initiatives is not given due consideration. After a careful assessment, this thesis provides recommendations and potential actions that could help these precision health approaches adhere to their social justice and health equity goals. This thesis has investigated these three main objectives using both empirical and theoretical research methods. The empirical branch consists of systematic and scoping reviews, both adhering to the PRISMA guidelines, and two interview-based studies carried out with Swiss expert stakeholders. The theoretical branch consists of three chapters, each addressing important aspects concerning precision health approaches

A framework for building an information society for selected countries in the southern African development community

Text in EnglishIn line with the World Summit on the Information Society and with the expectation that this would enable them to advance their development and improve the lives of the population, almost all the Southern African Development Community (SADC) countries had developed national information and communications technologies (ICT) policies. The purpose of this doctoral research was to investigate the theoretical underpinning(s) of the national ICT policies of the SADC countries in order to develop a theoretical framework for building an information society for development. The research employed a grounded theory design, utilising the NVivo11 software as a tool to support the analysis of the national ICT policies for the selected 12 of the 15 SADC countries, as well as the interviews of five knowledgeable informants. Content analysis and open-ended interviews were the research methods applied sequentially to develop the Capacitating Theory for Building the Information Society for Development (CaTBIS-4D) for SADC countries, which is the core of the theoretical framework that this thesis proposes. The research found that building an information society continues to remain relevant for SADC countries, and its achievement is dependent on capacitating human, infrastructure and financial factors. Significantly, the research concluded that the perceived failure of the information society project within the SADC countries is due to the arcaneness or obscurity of the recognition that development and the information society mutually reinforce upon each other such that the improvement of one contributes to the advancement in the other. Based on the research findings and conclusions, this research proposes a framework that contends that to build an information society for development, it is necessary/ crucial to capacitate the human, infrastructure and financial factors by focusing on identified economic sectors and social categories within an effective governing and implementation monitoring environment. The research recommends that as the national ICT policies within SADC countries are updated and implemented, the framework proposed in this research be utilised as a basis. Furthermore, the research recommends that the broadest range of local role-players should participate in the information society development project to ensure its endurance and relevance.Information ScienceD. Litt. et Phil. (Information Science

What were the socio-economic, political, and institutional factors influencing the construction of the Arms Trade Treaty?

Critiquing Martha Finnemore and Kathryn Sikkink's life-cycle hypotheses, this project tries to understand the socio-economic, political and institutional factors that influenced the construction of the Arms Trade Treaty (ATT). It addresses restless debates about the role of institutions in shaping behaviour, particularly in the context of unequal power distributions under United Nations (UN) voting rules. It questions what states had to gain from the Treaty, how power was exercised under consensus, and how this related to identity and norm formation. It also addresses ongoing debates about the power and influence of NGOs in international relations, questioning the extent at which NGOs were influential in the construction of the ATT despite restrictive access, and whether this alters or maintains the view of their influence in academia. It further questions the lengths at which institutionalised norms affect state preferences, particularly where economic, political and security factors are at stake. A number quantitative and qualitative sources are used to understand how rationality and legitimacy arguments are applicable to states promotion and opposition to ATT provisions, and questions how state preferences are influenced through peer pressure and esteem. The thesis concludes that regional groups have significant power in formulating the preferences of its member states. Challenging mainstream arguments made by constructivists, it also questions the extent at which states are 'socialised' or persuaded to support norms. Additionally, despite restricted access, and challenging aspects of the theory, NGOs were able to influence the agenda at the norm emergence and negotiation stages. It also clarifies areas where Finnemore and Sikkink's hypothesis is lacking or oversimplified, particularly 'tipping points' stages, in state socialisation, and where institutional factors, rather than purely social, were major element contributing to in the Treaty's construction