scholarly journals Key Points for an Ethical Evaluation of Healthcare Big Data

Processes ◽  
2019 ◽  
Vol 7 (8) ◽  
pp. 493 ◽  
Author(s):  
Pilar Leon-Sanz
Keyword(s):  
Big Data ◽  
Ethical Issues ◽  
Group Identification ◽  
Life Sciences ◽  
Personal Data ◽  
Use Of Data ◽  
New Concepts ◽  
Key Points ◽  
Bioethical Debate ◽  
The Relationship

Background: The article studies specific ethical issues arising from the use of big data in Life Sciences and Healthcare. Methods: Main consensus documents, other studies, and particular cases are analyzed. Results: New concepts that emerged in five key areas for the bioethical debate on big data and health are identified—the accuracy and validity of data and algorithms, questions related to transparency and confidentiality in the use of data; aspects that raise the coding or pseudonymization and the anonymization of data, and also problems derived from the possible individual or group identification; the new ways of obtaining consent for the transfer of personal data; the relationship between big data and the responsibility of professional decision; and the commitment of the Institutions and Public Administrations. Conclusions: Good practices in the management of big data related to Life Sciences and Healthcare depend on respect for the rights of individuals, the improvement that these practices can introduce in assistance to individual patients, the promotion of society’s health in general and the advancement of scientific knowledge.

Evaluation of Big Data within the Context of the Protection of Personal Data and Competition Law

2020 ◽  
pp. 219-246
Author(s):  
Fatma Arvas
Keyword(s):  
Big Data ◽  
Conflict Of Interest ◽  
Personal Data ◽  
Competition Law ◽  
Market Strategy ◽  
Legal Principles ◽  
Legal Problems ◽  
Personal Rights ◽  
Foreign Law ◽  
The Relationship

In order to sustain their presence in the market, personal data acquirers must obtain, store, and process personal data from sources that feed data such as social media shares, shopping records, and sensor networks. On the other hand, the problem of conformity of real and legal persons whose personal data are processed within the framework of personal data law brings about many legal problems and requires a profound research rather than a limited examination. The fact that a small number of enterprises create dominant power by using big data in market strategy has led to data-dependent companies or markets. Due to the effects that big data caused in the market, there is a need to address many problems in the field of competition law as well as the dimension of privacy and personal rights. In this context, the conflict of interest between the economic interest created by big data and the legal principles of personal data will be addressed and compared with regard to Turkish law and foreign law practices by discussing the relationship between big data and competition law.

Why privacy is not enough privacy in the context of “ubiquitous computing” and “big data”

2014 ◽  
Vol 12 (2) ◽  
pp. 93-106 ◽  
Author(s):  
Tobias Matzner
Keyword(s):  
Big Data ◽  
Ubiquitous Computing ◽  
New Technologies ◽  
Personal Data ◽  
Quality Of Data ◽  
Content Type ◽  
Privacy Threats ◽  
New Concepts ◽  
New Perspective

Purpose – Ubiquitous computing and “big data” have been widely recognized as requiring new concepts of privacy and new mechanisms to protect it. While improved concepts of privacy have been suggested, the paper aims to argue that people acting in full conformity to those privacy norms still can infringe the privacy of others in the context of ubiquitous computing and “big data”. Design/methodology/approach – New threats to privacy are described. Helen Nissenbaum's concept of “privacy as contextual integrity” is reviewed concerning its capability to grasp these problems. The argument is based on the assumption that the technologies work, persons are fully informed and capable of deciding according to advanced privacy considerations. Findings – Big data and ubiquitous computing enable privacy threats for persons whose data are only indirectly involved and even for persons about whom no data have been collected and processed. Those new problems are intrinsic to the functionality of these new technologies and need to be addressed on a social and political level. Furthermore, a concept of data minimization in terms of the quality of the data is proposed. Originality/value – The use of personal data as a threat to the privacy of others is established. This new perspective is used to reassess and recontextualize Helen Nissenbaum's concept of privacy. Data minimization in terms of quality of data is proposed as a new concept.

scholarly journals Uso de correo electrónico para analizar la comunicación bilateral aplicando Big Data y Regresión Lineal Simple

2019 ◽  
pp. 21-28
Author(s):  
Luz María Hernández-Cruz ◽  
Diana Concepción Mex-Alvarez ◽  
Guadalupe Manuel Estrada-Segovia ◽  
Margarita Castillo-Tellez
Keyword(s):  
Big Data ◽  
Linear Regression ◽  
Personal Data ◽  
Simple Linear Regression ◽  
Productive Labor ◽  
Working Groups ◽  
Microsoft Office ◽  
The Relationship ◽  
Academic Group

Currently, the email is the most used network service as a means of communication for sending and receiving messages and files. The objective of this study is to perform an analysis of institutional emails by applying a strategic that ensures the existence of a bilateral communication between the employees. The research is of applied type, which will allow to predict assertive working groups with prosperous and productive labor relations. The study integrates the application of a Technological Big Data tool called Immersion and the analysis of a Simple Linear Regression (PLS) model using Microsoft Office Excel. The adapted methodology is composed of three phases: first, the "Data Collection" where a large volume of data is collected (personal data) from an institutional email account for the case study, then we have the "Analysis" where a simple linear regression model is constructed to analyze the relationship between the collected data and finally, the "Interpretation" where the obtained results are explained. Having important applications such as the integration of academic group, thematic networks, disciplinary committees or collaborative members in projects.

ACTUAL PROBLEMS OF BIOETHICS

2021 ◽  
pp. 56-63
Author(s):  
Oleg Letov ◽  
Keyword(s):  
Ethical Issues ◽  
Freedom Of Expression ◽  
Personal Data ◽  
Health Data ◽  
Self Determination ◽  
Gender Transition ◽  
Moral Principles ◽  
Ethical Debate ◽  
The Right ◽  
The Relationship

This review examines such ethical categories as human dignity, freedom of expression, identity, etc. It is emphasized that when changing sex, this right is a powerful form of control over personal data, especially health data, which may indicate a gender that they are not. identify and not reject. In the context of gender transition, the relationship between the «right to self-determination», «the right to deletion» and «the right to identity and individuality» is discussed. With regard to ethical issues in the fight against coronavirus, much of the ethical debate caused by the pandemic has been about what moral principles can be used to justify such a choice.

Digital Ethics

2022 ◽  
pp. 526-551
Keyword(s):  
Artificial Intelligence ◽  
Big Data ◽  
Ethical Issues ◽  
Personal Data ◽  
Digital Technologies ◽  
Codes Of Ethics ◽  
Digital Ethics ◽  
Management Association ◽  
Legal Challenges ◽  
Right Of Access

The purpose of this chapter is to discuss strategies that can be applied in the domain of cyberlaw. The chapter begins by distinguishing between ethics, morality, and law. It then focuses on the relation between ethics and digital technologies. The chapter then examines proposals for what should be included in codes of ethics as well as examples of codes of ethics for IT companies. The examples include the British Computer Society, the Association for Computer Machinery, and the Data Processing Management Association. Next, ethical codes for regulating automation, computerization, and artificial intelligence are summarized. The chapter then discusses ethical issues surrounding privacy, anonymity, and personal data, including the EU's right of access by data subjects as well as issues connected with big data. The chapter then focuses on crimes caused by digitization and the protection of intellectual property. The chapter concludes by considering recent laws of ecommerce as well as social and international legal challenges of regulating cyberspace.

scholarly journals Datafied Citizens in the Age of Coerced Digital Participation

2019 ◽  
Vol 24 (3) ◽  
pp. 414-429 ◽  
Author(s):  
Veronica Barassi
Keyword(s):  
Big Data ◽  
First Generation ◽  
Personal Data ◽  
Private And Public ◽  
New Type ◽  
Economic Infrastructure ◽  
Data Surveillance ◽  
The Uk ◽  
Political Economic ◽  
The Relationship

This article explores the relationship between surveillance capitalism, big data, and the emergence of a new type of datafied citizenship by looking at two different, yet interconnected, dimensions. In the first place, it considers how under surveillance capitalism individuals are being profiled simultaneously as consumer and citizen subjects by a complex political economic infrastructure that brings private and public entities together. In the second place, it argues that surveillance capitalism depends on the systematic coercion of digital participation, which forces citizens to comply with data technologies and give up their personal data. If we want to understand the extent of these transformation, the article argues, we need to look at children. Children have traditionally been excluded from debates about citizenship because they have often been understood as not-yet citizens or future citizens. Yet, in the study of the relationship between data and citizenship, children today are the key. They are the very first generation of citizens who are datafied from before they are born and are coerced into digitally participating to society through the data traces produced, collected, and processed by others without their consent or control. Drawing on the findings of the Child | Data | Citizen project, an ethnographically informed research project on big data and family life in the UK and US, this article will highlight some of the democratic challenges that emerge when we think about data, surveillance capitalism, and citizenship in everyday life.

scholarly journals Medical research, Big Data and the need for privacy by design

2019 ◽  
Vol 6 (1) ◽  
pp. 205395171882435 ◽  
Author(s):  
Bart Jacobs ◽  
Jean Popma
Keyword(s):  
Big Data ◽  
Medical Research ◽  
Scientific Community ◽  
Medical Center ◽  
Life Sciences ◽  
Personal Data ◽  
Research Data ◽  
Privacy By Design ◽  
Research Setting ◽  
Large Cohort Study

Medical research data is sensitive personal data that needs to be protected from unauthorized access and unintentional disclosure. In a research setting, sharing of (big) data within the scientific community is necessary in order to make progress and maximize scientific benefits derived from valuable and costly data. At the same time, convincingly protecting the privacy of people (patients) participating in medical research is a prerequisite for maintaining trust and willingness to share. In this commentary, we will address this issue and the pitfalls involved in the context of the PEP project 1 that provides the infrastructure for the Personalized Parkinson’s Project, 2 a large cohort study on Parkinson’s disease from Radboud University Medical Center (Radboudumc), in cooperation with Verily life Sciences, an Alphabet subsidiary.

scholarly journals INSPIRE Hackathons and SmartAfriHub – Roadmap for Addressing the Agriculture Data Challenges in Africa

2021 ◽  
Vol 13 (4) ◽  
pp. 33-48
Author(s):  
Karel Charvát ◽  
◽  
Akaninyene Obot ◽  
Stephen Kalyesubula ◽  
Foteini Zampati ◽  
...  
Keyword(s):  
Agricultural Development ◽  
Food System ◽  
Ethical Issues ◽  
Personal Data ◽  
Digital Innovation ◽  
Use Of Data ◽  
Privacy Laws ◽  
Farmer Organisations ◽  
Legal And Ethical Issues ◽  
Digital Farming

Digital farming holds enormous potential for agricultural development, and giving farmers the tools to boost productivity and profitability. Although the benefits of digitalization are numerous, farmers feel they are not the ones benefiting from the value of data collected on their farms. Several issues were identified as factors restricting farmers from benefiting from data-driven agriculture. From the farmers’ perspective, there is a distinct lack of awareness of the issues surrounding farm data, and the complexity of these issues. This feeds into the imbalance that exists between individual farmers and larger agribusinesses wherein the former lack enough resources to address and analyse the significance of data, and so cannot take advantage of the value in it. There is also limited legislation for the generation, flow, exchange and use of data; where legislation does exist, it is not well understood by farmer organisations. From a policy perspective, moreover, there is very little guidance as to which agricultural data can be considered personal data, and therefore protected by privacy laws. This paper analyses the interactions and effects of the 5 Concepts: Open Agricultural Data, Open-Source Software, Citizen Science, privacy and legal and ethical issues that are assumed to advance the digitalization of African Food System (AFS and the enabling Digital Innovation Hub (DIH) - SmartAfriHub (https://www.smartafrihub.com/home).

scholarly journals Anticipatory Governance in Biobanking: Security and Risk Management in Digital Health

2021 ◽  
Vol 27 (3) ◽  
Author(s):  
Dagmar Rychnovská
Keyword(s):  
Big Data ◽  
Data Security ◽  
Digital Health ◽  
Life Sciences ◽  
Personal Data ◽  
Field Research ◽  
Societal Implications ◽  
Biomedical Data ◽  
Anticipatory Governance ◽  
Future Challenges

AbstractAlthough big-data research has met with multiple controversies in diverse fields, political and security implications of big data in life sciences have received less attention. This paper explores how threats and risks are anticipated and acted on in biobanking, which builds research repositories for biomedical samples and data. Focusing on the biggest harmonisation cluster of biomedical research in Europe, BBMRI-ERIC, the paper analyses different logics of risk in the anticipatory discourse on biobanking. Based on document analysis, interviews with ELSI experts, and field research, three types of framing of risk are reconstructed: data security, privacy, and data misuse. The paper finds that these logics downplay the broader social and political context and reflects on the limits of the practices of anticipatory governance in biobanking. It argues that this regime of governance can make it difficult for biobanks to address possible future challenges, such as access to biomedical data by authorities, pressures for integrating biobank data with other type of personal data, or their use for profiling beyond medical purposes. To address potential controversies and societal implications related to the use of big data in health research and medicine, the paper suggests to expand the vocabulary and practices of anticipatory governance, in the biobanking community and beyond.

Legal Responses to the Commodification of Personal Data in the Era of Big Data

2016 ◽  
pp. 130-139
Author(s):  
Emile Douilhet ◽  
Argyro P. Karanasiou
Keyword(s):  
Big Data ◽  
Personal Data ◽  
Raw Data ◽  
New Information ◽  
Legal Responses ◽  
Key Players ◽  
Data Market ◽  
Legislative Framework ◽  
The Relationship ◽  
Legal Grounds

Big Data is a relatively recent phenomenon, but has already shown its potential to drastically alter the relationship between businesses, individuals, and governments. Many organisations now control vast amounts of raw data, and those industry players with the resources to mine that data to create new information have a significant advantage in the big data market. The aim of this chapter is to identify the legal grounds for the ownership of big data: who legally owns the petabytes and exabytes of information created daily? Does this belong to the users, the data analysts, or to the data brokers and various infomediaries? The chapter presents a succinct overview of the legal ownership of big data by examining the key players in control of the information at each stage of processing of big data. It then moves on to describe the current legislative framework with regard to data protection and concludes in additional techno-legal solutions offered to complement the law of big data in this respect.

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