Societal, legal, and ethical aspects
The collection, analysis, storage and sharing of large data sets raise many profound societal, legal and ethical questions. Finding the answers requires interdisciplinary efforts that bring together multiple stakeholders. This chapter reviews the new perspectives brought by NRP75 on issues of data ownership, control, access and transfer, of privacy and digital sovereignty, of discrimination and fairness, and of knowledge management.
NRP75 has analysed numerous ethical, regulatory and legal issues raised by the rapid growth of big data applications and practices, both at a broad conceptual level and in specific contexts. NRP75 researchers studied specific application domains such as healthcare, traced how regulations spread internationally, wrote guidelines for the insurance industry, studied the potential for discrimination in human resources, developed frameworks for the ethical use of data in healthcare and examined how the new profession of data scientist has emerged. They also analysed generic questions related to sovereignty and control of data, regulation of the use of big data in research, and the need to address new uncertainties brought about by predictive models.
Data ownership, control, access, and transfer
Data is produced, collected, analysed and shared at an unprecedented scale by organisations and individuals with a variety of roles. For example, governments publish part of their data – usually aggregated and rarely at the level of individuals – in keeping with the paradigm of open data. In contrast, commercial entities tend to hoard data, sharing it only reluctantly.
Fairness, privacy, and Sovereignty
Data privacy and security are among the most debated policy issues raised by big data. Taken together, the technological advances in big data raise doubts about the adequacy of traditional principles of data protection.
Knowledge production and management
The creators of big data applications play a central role in developing and maintaining ethical guidelines and practices, both general and domain specific. In addition to the project Regulating big data research, two other NRP75 projects studied how big data impacts the research and knowledge professions.
Challenges and key messages
Challenges in investigating the societal, ethical and legal issues of big data
Research on big data in society has to deal with rapidly changing technology and regulatory issues, such as the dwindling concept of data ownership (Legal challenges of big data). This calls for flexible research programmes and funding.
As with projects on applications and infrastructure, it can be hard acquiring data (even academic data) for this social-science research (Big data in practice, Big data in insurance, Uncertainty in big data) – although it was possible in one area (Trade agreements).
Ethical and legal evaluation of big data systems is essentially interdisciplinary, which makes it hard to agree on terminology, methodology and concepts – particularly among data scientists, modellers and legal scholars (Legal challenges of big data, Uncertainty in big data).
Key messages
Although NRP 75 only partially addressed a subset of all societal, legal and ethical questions relating to big data, its research nevertheless highlights some generic issues.
- Both the public and private spheres must be more transparent about the use of big data.
- Additional academic research should consider big data’s potential impact on democracy. These include the increasingly important role of analytics in social media, which accelerates the dissemination of false information and data manipulation. Such developments should not be left to the discretion of commercial companies.
- Aside from the technology, societal aspects of big data analytics should not be neglected in future deliberations.
Addressing societal issues
New data technologies are disrupting personal and business life, with data aggregation and analysis as well as analytics techniques having major effects on sectors such as healthcare and the workplace. This requires carrying out contextualised analyses and anticipating social consequences, as well as drafting practical guidelines adapted to different environments (Big data in health, Big data in human resources, Big data in insurance, Regulating big data research).
Drafting appropriate regulation
The legal system needs to set up a proportionate normative framework. Given that the concept of ownership is ill-suited to (non-physical) data, legislators could start to formulate the alternative concept of a data right holder that centres on control of and access to data. New normative instruments will be needed in areas such as the blockchain, and there should be neither too much nor too little regulation.
Developing ethical guidelines
Ethical guidelines are needed because inclusiveness and fairness are not well prescribed in law while many principles of non-discrimination are not covered by constitutions.
Such guidelines should therefore be created using concrete processes that are situation-specific and involve multiple stakeholders – the more stakeholders there are, the more likely it is that the guidelines will be followed. (Big data in health, Big data in insurance, Regulating big data research).