Self-interest and data protection drive the adoption and moral acceptability of big data technologies: A conjoint analysis approach

The concept of big data has been incorporated in majority of areas. The educational sector has plethora of data especially in online education which plays a vital in modern education. Moreover digital learning which comprises of data and analytics contributes significantly to enhance teaching and learning. The key challenge for handling such data can be a costly affair. IBM has introduced the technology "Cognitive Storage" which ensures that the most relevant information is always on hand. This technology governs the incoming data, stores the data in definite media, application of levels of data protection, policies for the lifecycle and retention of different classes of data. This technology can be very beneficial for online learning in Indian scenario. This technology will be very beneficial in Indian society so as to store more information for the upliftment of the students’ knowledge.

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Record linkage of routine data with cohorts’ data of infants under European and Portuguese law

European Journal of Public Health ◽

10.1093/eurpub/ckaa166.178 ◽

2020 ◽

Vol 30 (Supplement_5) ◽

Author(s):

J Doetsch ◽

I Lopes ◽

R Redinha ◽

H Barros

Keyword(s):

Big Data ◽

Data Processing ◽

Data Protection ◽

Record Linkage ◽

Data Science ◽

Personal Data ◽

Routine Data ◽

Cohort Data ◽

Education Data ◽

Explicit Consent

Abstract The usage and exchange of “big data” is at the forefront of the data science agenda where Record Linkage plays a prominent role in biomedical research. In an era of ubiquitous data exchange and big data, Record Linkage is almost inevitable, but raises ethical and legal problems, namely personal data and privacy protection. Record Linkage refers to the general merging of data information to consolidate facts about an individual or an event that are not available in a separate record. This article provides an overview of ethical challenges and research opportunities in linking routine data on health and education with cohort data from very preterm (VPT) infants in Portugal. Portuguese, European and International law has been reviewed on data processing, protection and privacy. A three-stage analysis was carried out: i) interplay of threefold law-levelling for Record Linkage at different levels; ii) impact of data protection and privacy rights for data processing, iii) data linkage process' challenges and opportunities for research. A framework to discuss the process and its implications for data protection and privacy was created. The GDPR functions as utmost substantial legal basis for the protection of personal data in Record Linkage, and explicit written consent is considered the appropriate basis for the processing sensitive data. In Portugal, retrospective access to routine data is permitted if anonymised; for health data if it meets data processing requirements declared with an explicit consent; for education data if the data processing rules are complied. Routine health and education data can be linked to cohort data if rights of the data subject and requirements and duties of processors and controllers are respected. A strong ethical context through the application of the GDPR in all phases of research need to be established to achieve Record Linkage between cohort and routine collected records for health and education data of VPT infants in Portugal. Key messages GDPR is the most important legal framework for the protection of personal data, however, its uniform approach granting freedom to its Member states hampers Record Linkage processes among EU countries. The question remains whether the gap between data protection and privacy is adequately balanced at three legal levels to guarantee freedom for research and the improvement of health of data subjects.

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