La ética de los datos en las organizaciones e instituciones públicas y la gobernanza en el sector de la salud digital

Abstract

According to the European Data Protection Supervisor (2015), the responsibility for meeting the challenge of the digital age could rest with an interdependent ecosystem of developers, companies and regulators. This is an opportunity to bring ethics into organisations also in the form of corporate social responsibility as an active and voluntary contribution to social improvement that aims to improve the competitive and value situation of the company while taking into account respect for the fundamental right of data protection of individuals. A priori, there are some questions that can be raised, such as: how can data ethics solve the challenges posed by the digital transformation of the industry; will ethics be brought to companies (data controllers and processors) in a similar way to what is known as corporate social responsibility? Data ethics is seen as a new branch of ethics that delves into data-related moral issues arising from data processing. It aims to formulate solutions as right behaviours and pointing out right values. But how can we define what is right and what is wrong, what organisational behaviours will be right, and what organisational values will be right, and what principles should we take into account in the Covid-19 scenario? In the first part, we will address how data ethics is integrated in business organisations, reviewing some tools that are used to put it into practice, such as codes of ethics, internal whistleblowing channels, ethics committees, self-assessments, certifications and quality seals, ethics by design and privacy as a value, and we will also look at some success stories. Secondly, we will look at data ethics in the framework of public institutions and governance, focusing on issues such as scientific research and big data or cybersecurity. Finally, we will address the importance of data ethics in the covid scenario, taking into account the role of the citizen, the trend towards the commodification of data, purpose limitation, improving the readability of data protection policies, and data as a “common good” and the use of checklists.