[artigo] Ethics in Health Data Science

New technologies offer great opportunities to improve and expand the provision of health information and services worldwide. Digital health interventions (WHO 2018) include those designed for individuals, such as personalized health information delivered to their mobile phones; health care providers, such as decision support tools; and health systems, which include the digitization of health records. The other chapters outline the scope and potential for digital advances to impact global health outcomes. This chapter focuses on the responsibilities that accompany the adoption of these technologies. Specifically, we examine the ethical considerations to leveraging technology for global health, with a focus on resource-poor regions. Our paramount ethical consideration centers on putting the community and end user needs at the center of the approach. Using the concerned community as the starting point, all other ethical considerations follow, from safeguarding the rights of those impacted, which includes data privacy, security, and consent, to assessing unintended consequences.


How to Put the Data Subject’s Sovereignty into Practice. Ethical Considerations and Governance Perspectives

Peter Dabrock |

AIES ’20: Proceedings of the AAAI/ACM Conference on AI, Ethics, and SocietyFebruary 2020 Pages 1–2. |

Ethical considerations and governance approaches of AI are at a crossroads. Either one tries to convey the impression that one can bring back a status quo ante of our given “onlife”-era [1,2], or one accepts to get responsibly involved in a digital world in which informational self-determination can no longer be safeguarded and fostered through the old fashioned data protection principles of informed consent, purpose limitation and data economy [3,4,6]. The main focus of the talk is on how under the given conditions of AI and machine learning, data sovereignty (interpreted as controllability [not control (!)] of the data subject over the use of her data throughout the entire data processing cycle [5]) can be strengthened without hindering innovation dynamics of digital economy and social cohesion of fully digitized societies. In order to put this approach into practice the talk combines a presentation of the concept of data sovereignty put forward by the German Ethics Council [3] with recent research trends in effectively applying the AI ethics principles of explainability and enforceability [4-9]. |

Cross-Border Big Data Flows and Taxpayer Privacy

In the last ten years, governments have initiated several reforms to automatically exchange bulk taxpayer information with other governments (mainly via the Foreign Account Tax Compliance Act, the Common Reporting Standard and Country-by-Country Reporting). This enhanced sharing of tax information has been encouraged by technology change, including digitization, big data, and data analytics, and political trends, including government efforts to reduce offshore tax evasion and aggressive international tax avoidance. In some cases, however, legal protections for taxpayer privacy and other interests are insufficiently robust for this emerging international framework to share big tax data. Conceptually, taxpayers should be seen as ‘data subjects’ with rights proactively protected by data protection laws and policies, including fair information practices. An optimal regime balancing the interests between taxpayers and tax authorities should include a multilateral taxpayer bill of rights, a cross-border withholding tax in lieu of information exchange, and a global financial registry to allow governments to identify the beneficial owners of business and legal entities.

[artigo] Building up the “Accountable Ulysses” model. The impact of GDPR and national implementations, ethics, and health-data research: Comparative remarks

The paper illustrates obligations emerging under articles 9 and 89 of the EU Reg. 2016/679 (General Data Protection Regulation, hereinafter “GDPR”) within the health-related data processing for research purposes. Furthermore, through a comparative analysis of the national implementations of the GDPR on the topic, the paper highlights few practical issues that the researcher might deal with while accomplishing the GDPR obligations and the other ethical requirements. The result of the analyses allows to build up a model to achieve an acceptable standard of accountability in health-related data research. The legal remarks are framed within the myth of Ulysses.

[relatório] Data, privacy and the individual

Relatório de resultados do projeto Data, Privacy and the Individual do Center for the Governance of Change, IE University. O relatório contém um resumo de sete artigos e um questionário, resultados do projeto. Os temas vão da ética do tratamento de dados pessoais aos meios técnicos e tecnológicos de garantia da privacidade. A seguir um breve resumo em tópicos dos principais pontos levantados, e o link para download do documento ao final.

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