Results for 'General Data Protection Regulation '

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  1. Why a right to explanation of automated decision-making does not exist in the General Data Protection Regulation.Sandra Wachter, Brent Mittelstadt & Luciano Floridi - 2017 - International Data Privacy Law 1 (2):76-99.
    Since approval of the EU General Data Protection Regulation (GDPR) in 2016, it has been widely and repeatedly claimed that the GDPR will legally mandate a ‘right to explanation’ of all decisions made by automated or artificially intelligent algorithmic systems. This right to explanation is viewed as an ideal mechanism to enhance the accountability and transparency of automated decision-making. However, there are several reasons to doubt both the legal existence and the feasibility of such a right. (...)
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  2. Soft ethics: its application to the General Data Protection Regulation and its dual advantage.Luciano Floridi - 2018 - Philosophy and Technology 31 (1):163-167.
    In previous works (Floridi 2018) I introduced the distinction between hard ethics (which may broadly be described as what is morally right and wrong independently of whether something is legal or illegal), and soft or post-compliance ethics (which focuses on what ought to be done over and above existing legislation). This paper analyses the applicability of soft ethics to the General Data Protection Regulation and advances the theory that soft ethics has a dual advantage—as both an (...)
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  3. ICTs, data and vulnerable people: a guide for citizens.Alexandra Castańeda, Andreas Matheus, Andrzej Klimczuk, Anna BertiSuman, Annelies Duerinckx, Christoforos Pavlakis, Corelia Baibarac-Duignan, Elisabetta Broglio, Federico Caruso, Gefion Thuermer, Helen Feord, Janice Asine, Jaume Piera, Karen Soacha, Katerina Zourou, Katherin Wagenknecht, Katrin Vohland, Linda Freyburg, Marcel Leppée, Marta CamaraOliveira, Mieke Sterken & Tim Woods - 2021 - Bilbao: Upv-Ehu.
    ICTs, personal data, digital rights, the GDPR, data privacy, online security… these terms, and the concepts behind them, are increasingly common in our lives. Some of us may be familiar with them, but others are less aware of the growing role of ICTs and data in our lives - and the potential risks this creates. These risks are even more pronounced for vulnerable groups in society. People can be vulnerable in different, often overlapping, ways, which place them (...)
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  4. Workshop Report: Creating a Citizens’ Information Pack on Ethical and Legal Issues Around Icts: What Should Be Included?Janice Asine, Corelia Baibarac-Duignan, Elisabetta Broglio, Alexandra Castańeda, Helen Feord, Linda Freyburg, Marcel Leppée, Andreas Matheus, Marta Camara Oliveira, Christoforos Pavlakis, Jaume Peira, Karen Soacha, Gefion Thuermer, Katrin Vohland, Katherin Wagenknecht, Tim Woods, Katerina Zourou, Federico Caruso, Annelies Duerinckx, Andrzej Klimczuk, Mieke Sterken & Anna Berti Suman - 2020 - European Citizen Science Association.
    The aim of this workshop was to ask potential end-users of the citizens’ information pack on legal and ethical issues around ICTs the following questions: What is your knowledge of the EU’s General Data Protection Regulation, and what actions have you taken in response to these regulations? What challenges are you experiencing in ensuring the protection and security of your project data, and compliance with the GDPR, within existing data management processes/systems? What information/tools/resources (...)
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  5. Data, Privacy, and the Individual.Carissa Véliz - 2020 - Center for the Governance of Change.
    The first few years of the 21st century were characterised by a progressive loss of privacy. Two phenomena converged to give rise to the data economy: the realisation that data trails from users interacting with technology could be used to develop personalised advertising, and a concern for security that led authorities to use such personal data for the purposes of intelligence and policing. In contrast to the early days of the data economy and internet surveillance, the (...)
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  6. Towards a digital ethics: EDPS ethics advisory group.J. Peter Burgess, Luciano Floridi, Aurélie Pols & Jeroen van den Hoven - 2018 - EDPS Ethics Advisory Group.
    The EDPS Ethics Advisory Group (EAG) has carried out its work against the backdrop of two significant social-political moments: a growing interest in ethical issues, both in the public and in the private spheres and the imminent entry into force of the General Data Protection Regulation (GDPR) in May 2018. For some, this may nourish a perception that the work of the EAG represents a challenge to data protection professionals, particularly to lawyers in the (...)
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  7. Etica Big Data în cercetare.Nicolae Sfetcu - manuscript
    Principalele probleme cu care se confruntă oamenii de știință în lucrul cu seturile mari de date (Big Data), evidențiind principale aspecte etice, luând în considerare inclusiv legislația din Uniunea Europeană. După o scurtă Introducere despre Big Data, secțiunea Tehnologia prezintă aplicațiile specifice în cercetare. Urmează o abordare a principalelor probleme filosofice specifice în Aspecte filosofice, și Aspecte legale cu evidențierea problemelor etice specifice din Regulamentul UE privind protecția datelor 2016/679 (General Data Protection Regulation, "GDPR"). (...)
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  8. Big Data Ethics in Research.Nicolae Sfetcu - 2019 - Bucharest, Romania: MultiMedia Publishing.
    The main problems faced by scientists in working with Big Data sets, highlighting the main ethical issues, taking into account the legislation of the European Union. After a brief Introduction to Big Data, the Technology section presents specific research applications. There is an approach to the main philosophical issues in Philosophical Aspects, and Legal Aspects with specific ethical issues in the EU Regulation on the protection of natural persons with regard to the processing of personal (...) and on the free movement of such data, and repealing Directive 95/46/EC (Data Protection Directive - General Data Protection Regulation, "GDPR"). The Ethics Issues section details the specific aspects of Big Data. After a brief section of Big Data Research, I finalize my work with the presentation of Conclusions on research ethics in working with Big Data. -/- ISBN 978-606-033-307-4 , DOI: 10.58679/MM14975 . (shrink)
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  9.  49
    The problem of the consent for the processing of health data, particularly for biomedical research purposes, from the perspective of fundamental rights protection in the Digital Era.Joaquín Sarrión Esteve - 2018 - Revista de Derecho y Genoma Humano: Genética, Biotecnología y Medicina Avanzada = Law and the Human Genome Review: Genetics, Biotechnology and Advanced Medicine 48:107-132.
    Health data processing fields face ethical and legal problems regarding fundamental rights. As we know, patients can benefit in the Digital Era from having health or medical information available, and medical decisions can be more effective with a better understanding of clinical histories, medical and health data thanks to the development of Artificial Intelligence, Internet of Things and other Digital technologies. However, at the same time, we need to guarantee fundamental rights, including privacy ones. The complaint about ethical (...)
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  10. Legal aspects of Big Data - GDPR.Nicolae Sfetcu - manuscript
    The use of Big Data presents significant legal problems, especially in terms of data protection. The existing legal framework of the European Union based in particular on the Directive no. 46/95/EC and the General Regulation on the Protection of Personal Data provide adequate protection. But for Big Data, a comprehensive and global strategy is needed. The evolution over time was from the right to exclude others to the right to control their (...)
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  11. Group privacy: a defence and an interpretation.Luciano Floridi - 2017 - In Bart van der Sloot, Luciano Floridi & Linnet Taylor (eds.), Group Privacy. Springer Verlag.
    In this chapter I identify three problems affecting the plausibility of group privacy and argue in favour of their resolution. The first problem concerns the nature of the groups in question. I shall argue that groups are neither discovered nor invented, but designed by the level of abstraction (LoA) at which a specific analysis of a social system is developed. Their design is therefore justified insofar as the purpose, guiding the choice of the LoA, is justified. This should remove the (...)
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  12.  39
    Ethical and social reflections on the proposed European Health Data Space.Ciara Staunton, Mahsa Shabani, Deborah Mascalzoni, Signe Mezinska & Santa Slokenberga - 2024 - European Journal of Human Genetics 1 (1):1-9.
    The COVID-19 pandemic demonstrated the benefits of international data sharing. Data sharing enabled the health care policy makers to make decisions based on real-time data, it enabled the tracking of the virus, and importantly it enabled the development of vaccines that were crucial to mitigating the impact of the virus. This data sharing is not the norm as data sharing needs to navigate complex ethical and legal rules, and in particular, the fragmented application of the (...)
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  13. L’éthique des mégadonnées (Big Data) en recherche.Nicolae Sfetcu - 2020 - Drobeta Turnu Severin: MultiMedia Publishing.
    Les principaux problèmes rencontrés par les scientifiques qui travaillent avec des ensembles de données massives (mégadonnées, Big Data), en soulignant les principaux problèmes éthiques, tout en tenant compte de la législation de l'Union européenne. Après une brève Introduction au Big Data, la section Technologie présente les applications spécifiques de la recherche. Il suit une approche des principales questions philosophiques spécifiques dans Aspects philosophiques, et Aspects juridiques en soulignant les problèmes éthiques spécifiques du règlement de l'UE sur la (...) des données 2016/679 (General Data Protection Regulation, « GDPR »). La section Problèmes éthiques détaille les problèmes spécifiques générés par le big data. Après une brève section de Recherche de big data, sont présentées les Conclusions sur l’éthique de la recherche dans l’utilisation du big data. SOMMAIRE: Abstract 1. Introduction - 1.1 Définitions - 1.2 Les dimensions du big data 2. La technologie - 2.1 Applications - - 2.1.1 En recherche 3. Aspects philosophiques 4 Aspects juridiques - 4.1 RGPD (GDPR) - - Étapes du traitement des données personnelles - - Principes du traitement des données - - Politique de confidentialité et transparence - - Finalités du traitement des données - - Confidentialité par conception et confidentialité implicite - - Le paradoxe (juridique) des mégadonnées 5. Problèmes éthiques - L'éthique dans la recherche - Prise de conscience - Consentement - Contrôle - Transparence - Confiance - Propriété - Surveillance et sécurité - Identité numérique - Réalité ajustée - De-anonymisation - Inégalité numérique - Confidentialité 6. Recherche des mégadonnées Conclusions Bibliographie DOI: 10.13140/RG.2.2.10128.56328 . (shrink)
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  14. State of the Art on Ethical, Legal, and Social Issues Linked to Audio- and Video-Based AAL Solutions.Alin Ake-Kob, Aurelija Blazeviciene, Liane Colonna, Anto Cartolovni, Carina Dantas, Anton Fedosov, Francisco Florez-Revuelta, Eduard Fosch-Villaronga, Zhicheng He, Andrzej Klimczuk, Maksymilian Kuźmicz, Adrienn Lukacs, Christoph Lutz, Renata Mekovec, Cristina Miguel, Emilio Mordini, Zada Pajalic, Barbara Krystyna Pierscionek, Maria Jose Santofimia Romero, Albert AliSalah, Andrzej Sobecki, Agusti Solanas & Aurelia Tamo-Larrieux - 2021 - Alicante: University of Alicante.
    Ambient assisted living technologies are increasingly presented and sold as essential smart additions to daily life and home environments that will radically transform the healthcare and wellness markets of the future. An ethical approach and a thorough understanding of all ethics in surveillance/monitoring architectures are therefore pressing. AAL poses many ethical challenges raising questions that will affect immediate acceptance and long-term usage. Furthermore, ethical issues emerge from social inequalities and their potential exacerbation by AAL, accentuating the existing access gap between (...)
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  15. Engaging the Public in Ethical Reasoning About Big Data.Justin Anthony Knapp - 2016 - In Soren Adam Matei & Jeff Collman (eds.), Ethical Reasoning in Big Data: An Exploratory Analysis. Springer. pp. 43-52.
    The public constitutes a major stakeholder in the debate about, and resolution of privacy and ethical The public constitutes a major stakeholder in the debate about, and resolution of privacy and ethical about Big Data research seriously and how to communicate messages designed to build trust in specific big data projects and the institution of science in general. This chapter explores the implications of various examples of engaging the public in online activities such as Wikipedia that contrast (...)
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  16. On human dignity as a foundation for the right to privacy.Luciano Floridi - 2016 - Philosophy and Technology 29 (4):307-312.
    In 2016, the European Parliament approved the General Data Protection Regulation (GDPR) whose core aim is the safeguarding of information privacy, and, by corollary, human dignity. Drawing on the field of philosophical anthropology, this paper analyses various interpretations of human dignity and human exceptionalism. It concludes that privacy is essential for humans to flourish and enable individuals to build a sense of self and the world.
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  17. A practical checklist for return of results from genomic research in the European context.Danya F. Vears, Signe Mežinska, Nina Hallowell, Heidi Beate Hallowell, Bridget Ellul, Therese Haugdahl Nøst, , Berge Solberg, Angeliki Kerasidou, Shona M. Kerr, Michaela Th Mayrhofer, Elizabeth Ormondroyd, Birgitte Wirum Sand & Isabelle Budin-Ljøsne - 2023 - European Journal of Human Genetics 1:1-9.
    An increasing number of European research projects return, or plan to return, individual genomic research results (IRR) to participants. While data access is a data subject’s right under the General Data Protection Regulation (GDPR), and many legal and ethical guidelines allow or require participants to receive personal data generated in research, the practice of returning results is not straightforward and raises several practical and ethical issues. Existing guidelines focusing on return of IRR are (...)
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  18. What We Informationally Owe Each Other.Alan Rubel, Clinton Castro & Adam Pham - forthcoming - In Algorithms & Autonomy: The Ethics of Automated Decision Systems. Cambridge University Press: Cambridge University Press. pp. 21-42.
    ABSTRACT: One important criticism of algorithmic systems is that they lack transparency. Such systems can be opaque because they are complex, protected by patent or trade secret, or deliberately obscure. In the EU, there is a debate about whether the General Data Protection Regulation (GDPR) contains a “right to explanation,” and if so what such a right entails. Our task in this chapter is to address this informational component of algorithmic systems. We argue that information access (...)
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  19. Becoming and being a biobank donor: The role of relationships and ethics.Signe Mezinska, Ilze Mileiko & Jekaterina Kaleja - 2020 - PLoS ONE 11 (15):1-14.
    Relational aspects, such as involvement of donor’s relatives or friends in the decision-making on participation in a research biobank, providing relatives’ health data to researchers, or sharing research findings with relatives should be considered when reflecting on ethical aspects of research biobanks. The aim of this paper is to explore what the role of donor’s relatives and friends is in the process of becoming and being a biobank donor and which ethical issues arise in this context. We performed qualitative (...)
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  20. Aspects juridiques des mégadonnées - RGPD (GDPR).Nicolae Sfetcu - manuscript
    L'utilisation des mégadonnée présente des problèmes juridiques importants, notamment en termes de protection des données. Le cadre juridique existant de l'Union européenne, basé notamment sur la Directive 46/95/CE et le Règlement général sur la protection des données (RGPD - en anglais : General Data Protection Regulation, GDPR) assurent une protection adéquate. Mais pour les mégadonnées, une stratégie globale et complète est nécessaire. L'évolution au fil du temps est passée du droit d'exclure les autres (...)
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  21.  69
    La regulación de los drones y la protección de los derechos fundamentales: especial atención a la tutela del menor (The regulation of drones and the protection of fundamental rights: special attention to the protection of minors).Joaquin Sarrión - 2018 - In Desafíos de la protección de menores en la sociedad digital: Internet, redes sociales y comunicación, Francisco Javier Durán Ruiz (dir.), Tirant lo blanch, 2018, ISBN 978-84-9169-753-4,. Valencia: Tirant lo Blanch. pp. 385-411.
    This paper is an approach to the regulation of drones and the protection of fundamental rights, particularly in relation to the use of drones equipped with image and data capture technologies, with special attention to the position and protection of minors.
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  22. Regulations Matter: Epistemic Monopoly, Domination, Patents, and the Public Interest.Zahra Meghani - 2021 - Philosophy and Technology (tba):1-26.
    This paper argues that regulatory agencies have a responsibility to further the public interest when they determine the conditions under which new technological products may be commercialized. As a case study, this paper analyzes the US 9th Circuit Court’s ruling on the efforts of the US Environmental Protection Agency to regulate an herbicide meant for use with seed that are genetically modified to be tolerant of the chemical. Using that case, it is argued that when regulatory agencies evaluate new (...)
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  23. Accessing Online Data for Youth Mental Health Research: Meeting the Ethical Challenges.Elvira Perez Vallejos, Ansgar Koene, Christopher James Carter, Daniel Hunt, Christopher Woodard, Lachlan Urquhart, Aislinn Bergin & Ramona Statache - 2019 - Philosophy and Technology 32 (1):87-110.
    This article addresses the general ethical issues of accessing online personal data for research purposes. The authors discuss the practical aspects of online research with a specific case study that illustrates the ethical challenges encountered when accessing data from Kooth, an online youth web-counselling service. This paper firstly highlights the relevance of a process-based approach to ethics when accessing highly sensitive data and then discusses the ethical considerations and potential challenges regarding the accessing of public (...) from Digital Mental Health services. It presents solutions that aim to protect young DMH service users as well as the DMH providers and researchers mining such data. Special consideration is given to service users’ expectations of what their data might be used for, as well as their perceptions of whether the data they post is public, private or open. We provide recommendations for planning and designing online research in an ethical manner that includes vulnerable young people as research participants. We emphasise the distinction between public, private and open data, which is crucial to comprehend the ethical challenges in accessing DMH data. Among our key recommendations, we foreground the need to consider a collaborative approach with the DMH providers while respecting service users’ control over personal data, and we propose the implementation of digital solutions embedded within the platform for explicit opt-out/opt-in recruitment strategies and ‘read more’ options. (shrink)
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  24. The Reality of Achieving the Requirements of Total Quality Management in University Colleges.Abdalqader A. Msallam, Amal A. Al Hila, Samy S. Abu Naser & Mazen J. Al Shobaki - 2020 - International Journal of Academic Management Science Research (IJAMSR) 4 (8):67-90.
    The study aimed to identify the reality of total quality management in university colleges in Gaza Strip, through its dimensions, which are (commitment of senior management; organizational building; employee empowerment; continuous improvement; focus on beneficiaries; management by facts), and to detect differences in the responses of sample members according to For personal variables (type; educational qualification; college; nature of work; years of service). The researchers used the descriptive analytical method, and used a main tool to collect information: the questionnaire consisted (...)
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  25. The DNA Technology (Use and Application) Regulation Bill, 2019: A Critical Analysis.Deepa Kansra, Manpreet Dhillon, Mandira Narain, Prabhat Mishra, Nupur Chowdhury & P. Puneeth - 2021 - Indian Law Institute Law Review 1 (Winter):278-301.
    The aim of this paper is to explain the emergence and use of DNA fingerprinting technology in India, noting the specific concerns faced by the Indian Legal System related to the use of this novel forensic technology in the justice process. Furthermore, the proposed construction of a National DNA Data Bank is discussed taking into consideration the challenges faced by the government in legislating the DNA Bill into law. A critical analysis of the DNA Technology (Use and Application) (...) Bill, 2019 is provided to throw light upon many ethical, social, and legal issues that need to be addressed before the operationalization of the Bill to ensure that this technology is governed democratically to protect the civil liberties of citizens. (shrink)
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  26. The Reality of Achieving the Requirements of Total Quality Management in University Colleges.Abdalqader A. Msallam, Amal A. Al Hila, Samy S. Abu Naser & Mazen J. Al Shobaki - 2020 - International Journal of Academic Management Science Research (IJAMSR) 4 (8):67-90.
    The study aimed to identify the reality of total quality management in university colleges in Gaza Strip, through its dimensions, which are (commitment of senior management; organizational building; employee empowerment; continuous improvement; focus on beneficiaries; management by facts), and to detect differences in the responses of sample members according to For personal variables (type; educational qualification; college; nature of work; years of service). The researchers used the descriptive analytical method, and used a main tool to collect information: the questionnaire consisted (...)
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  27. Functioning of Healthcare Facilities under the Martial Law.Tetiana Sviatenko, Inna Gogunska, Oleksandr P. Krupskyi, Tetiana Ihnatova & Liubov Bilyk - 2023 - Khazar Journal of Humanities and Social Sciences 26 (3):24-27.
    This topic focuses on the problems that arise in providing medical care to the population during armed conflict or martial law. Under such conditions, hospitals, clinics, and other healthcare facilities have to work in challenging circumstances with limited resources and reduced security for medical personnel. This topic explores such issues as how martial law affects the work of medical institutions, what problems arise in providing medical care to the population in war, how war affects the health of the people, and (...)
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  28. Open data, data protection, and group privacy.Luciano Floridi - 2014 - Philosophy and Technology 27 (1):1–3.
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  29. The Effect of Total Quality Management in Achieving the Requirements of Quality of Career among University Colleges Employees.Abdalqader A. Msallam, Amal A. Al Hila, Samy S. Abu Naser & Mazen J. Al Shobaki - 2020 - International Journal of Academic Management Science Research (IJAMSR) 4 (10):45-65.
    The study aimed to identify the effect of Total Quality Management in achieving the requirements of the quality of job life among university college employees, and the researchers used the descriptive and analytical approach, and used a main tool to collect information, which is: the questionnaire. The study population reached (596) academic and administrative employees distributed among (5) University colleges in Gaza Strip, and a stratified random sample of (240) employees was selected, approximately (40.3%) of the study population. SPSS software (...)
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  30.  56
    Generalized plithogenic whole hypersoft set, PFHSS-Matrix, operators and applications as COVID-19 data structures.Shazia Rana, Muhammad Saeed, Madiha Qayyum & Florentin Smarandache - 2023 - Journal of Intelligent and Fuzzy Systems 44.
    This article is a preliminary draft for initiating and commencing a new pioneer dimension of expression. To deal with higher-dimensional data or information flowing in this modern era of information technology and artificial intelligence, some innovative super algebraic structures are essential to be formulated. In this paper, we have introduced such matrices that have multiple layers and clusters of layers to portray multi-dimensional data or massively dispersed information of the plithogenic universe made up of numerous subjects their attributes, (...)
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  31. Transparent, explainable, and accountable AI for robotics.Sandra Wachter, Brent Mittelstadt & Luciano Floridi - 2017 - Science (Robotics) 2 (6):eaan6080.
    To create fair and accountable AI and robotics, we need precise regulation and better methods to certify, explain, and audit inscrutable systems.
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  32. Networks of Gene Regulation, Neural Development and the Evolution of General Capabilities, Such as Human Empathy.Alfred Gierer - 1998 - Zeitschrift Für Naturforschung C - A Journal of Bioscience 53:716-722.
    A network of gene regulation organized in a hierarchical and combinatorial manner is crucially involved in the development of the neural network, and has to be considered one of the main substrates of genetic change in its evolution. Though qualitative features may emerge by way of the accumulation of rather unspecific quantitative changes, it is reasonable to assume that at least in some cases specific combinations of regulatory parts of the genome initiated new directions of evolution, leading to novel (...)
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  33. The use of confidentiality and anonymity protections as a cover for fraudulent fieldwork data.M. V. Dougherty - 2021 - Research Ethics 17 (4):480-500.
    Qualitative fieldwork research on sensitive topics sometimes requires that interviewees be granted confidentiality and anonymity. When qualitative researchers later publish their findings, they must ensure that any statements obtained during fieldwork interviews cannot be traced back to the interviewees. Given these protections to interviewees, the integrity of the published findings cannot usually be verified or replicated by third parties, and the scholarly community must trust the word of qualitative researchers when they publish their results. This trust is fundamentally abused, however, (...)
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  34.  22
    Between Privacy and Utility: On Differential Privacy in Theory and Practice.Jeremy Seeman & Daniel Susser - 2023 - Acm Journal on Responsible Computing 1 (1):1-18.
    Differential privacy (DP) aims to confer data processing systems with inherent privacy guarantees, offering strong protections for personal data. But DP’s approach to privacy carries with it certain assumptions about how mathematical abstractions will be translated into real-world systems, which—if left unexamined and unrealized in practice—could function to shield data collectors from liability and criticism, rather than substantively protect data subjects from privacy harms. This article investigates these assumptions and discusses their implications for using DP to (...)
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  35. A Structural Equation Model of Writing Skills: Mixed Method.Merlyn E. Arevalo & Melissa C. Napil - 2023 - International Journal of Multidisciplinary Educational Research and Innovation 1 (4):37-59.
    The study's general objective is to determine the students' stance on the most appropriate model of writing skills, using Structural Equation Modeling (SEM) as a basic design in the relationship of self-regulated learning strategies, communicative learning strategies, learning grammatical strategies, and writing skills. This study used a mixed-method sequential explanatory design, in which quantitative design is more widely used than qualitative Creswell, J., & Creswell, D. (2017). The researcher used the stratified random sampling technique for selecting respondents and, by (...)
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  36. A comparative analysis of biomedical research ethics regulation systems in Europe and Latin America with regard to the protection of human subjects.E. Lamas, M. Ferrer, A. Molina, R. Salinas, A. Hevia, A. Bota, D. Feinholz, M. Fuchs, R. Schramm, J. -C. Tealdi & S. Zorrilla - 2010 - Journal of Medical Ethics 36 (12):750-753.
    The European project European and Latin American Systems of Ethics Regulation of Biomedical Research Project (EULABOR) has carried out the first comparative analysis of ethics regulation systems for biomedical research in seven countries in Europe and Latin America, evaluating their roles in the protection of human subjects. We developed a conceptual and methodological framework defining ‘ethics regulation system for biomedical research’ as a set of actors, institutions, codes and laws involved in overseeing the ethics of biomedical (...)
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  37. Data subject rights as a research methodology: A systematic literature review.Adamu Adamu Habu & Tristan Henderson - 2023 - Journal of Responsible Technology 16 (C):100070.
    Data subject rights provide data controllers with obligations that can help with transparency, giving data subjects some control over their personal data. To date, a growing number of researchers have used these data subject rights as a methodology for data collection in research studies. No one, however, has gathered and analysed different academic research studies that use data subject rights as a methodology for data collection. To this end, we conducted a systematic (...)
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  38. Open data, open review and open dialogue in making social sciences plausible.Quan-Hoang Vuong - 2017 - Nature: Scientific Data Updates 2017.
    Nowadays, protecting trust in social sciences also means engaging in open community dialogue, which helps to safeguard robustness and improve efficiency of research methods. The combination of open data, open review and open dialogue may sound simple but implementation in the real world will not be straightforward. However, in view of Begley and Ellis’s (2012) statement that, “the scientific process demands the highest standards of quality, ethics and rigour,” they are worth implementing. More importantly, they are feasible to work (...)
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  39.  77
    Big Data as Tracking Technology and Problems of the Group and its Members.Haleh Asgarinia - 2023 - In Kevin Macnish & Adam Henschke (eds.), The Ethics of Surveillance in Times of Emergency. Oxford University Press. pp. 60-75.
    Digital data help data scientists and epidemiologists track and predict outbreaks of disease. Mobile phone GPS data, social media data, or other forms of information updates such as the progress of epidemics are used by epidemiologists to recognize disease spread among specific groups of people. Targeting groups as potential carriers of a disease, rather than addressing individuals as patients, risks causing harm to groups. While there are rules and obligations at the level of the individual, we (...)
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  40. The historical foundations of the research-practice distinction in bioethics.Tom L. Beauchamp & Yashar Saghai - 2012 - Heoretical Medicine and Bioethics 33 (1):45-56.
    The distinction between clinical research and clinical practice directs how we partition medicine and biomedical science. Reasons for a sharp distinction date historically to the work of the National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research, especially to its analysis of the “boundaries” between research and practice in the Belmont Report (1978). Belmont presents a segregation model of the research-practice distinction, according to which research and practice form conceptually exclusive sets of activities and interventions. (...)
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  41. Privacy in Public and the contextual conditions of agency.Maria Brincker - 2017 - In Timan Tjerk, Koops Bert-Jaap & Newell Bryce (eds.), (forthcoming) in Privacy in Public Space: Conceptual and Regulatory Challenges. Edward Elgar.
    Current technology and surveillance practices make behaviors traceable to persons in unprecedented ways. This causes a loss of anonymity and of many privacy measures relied on in the past. These de facto privacy losses are by many seen as problematic for individual psychology, intimate relations and democratic practices such as free speech and free assembly. I share most of these concerns but propose that an even more fundamental problem might be that our very ability to act as autonomous and purposive (...)
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  42. Why study movement variability in autism?Maria Brincker & Elizabeth Torres - 2017 - In Torres Elizabeth & Whyatt Caroline (eds.), Autism the movement-sensing approach. CRC Press - Taylor & Francis Group.
    Autism has been defined as a disorder of social cognition, interaction and communication where ritualistic, repetitive behaviors are commonly observed. But how should we understand the behavioral and cognitive differences that have been the main focus of so much autism research? Can high-level cognitive processes and behaviors be identified as the core issues people with autism face, or do these characteristics perhaps often rather reflect individual attempts to cope with underlying physiological issues? Much research presented in this volume will point (...)
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  43. Data and Afrofuturism: an emancipated subject?Aisha Paulina Lami Kadiri - 2021 - Internet Policy Review 10 (4):1-26.
    The concept of an individual, liberal data subject, who was traditionally at the centre of data protection efforts has recently come under scrutiny. At the same time, the particularly destructive effect of digital technology on Black people establishes the need for an analysis that not only considers but brings racial dimensions to the forefront. I argue that because Afrofuturism situates the Black struggle in persistent, yet continuously changing structural disparities and power relations, it offers a powerful departure (...)
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  44. Is Time Travel Too Strange to Be Possible? - Determinism and Indeterminism on Closed Timelike Curves.Ruward A. Mulder & Dennis Dieks - 2017 - In Anguel S. Stefanov & Marco Giovanelli (eds.), General Relativity 1916 - 2016. Montreal, Canada: Minkowski Institute Press. pp. 93-114.
    Notoriously, the Einstein equations of general relativity have solutions in which closed timelike curves occur. On these curves time loops back onto itself, which has exotic consequences: for example, traveling back into one's own past becomes possible. However, in order to make time travel stories consistent constraints have to be satisfied, which prevents seemingly ordinary and plausible processes from occurring. This, and several other "unphysical" features, have motivated many authors to exclude solutions with CTCs from consideration, e.g. by conjecturing (...)
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  45. Storytelling beyond the academy: Exploring roles, responsibilities and regulations in the Open Access dissemination of research outputs and visual data.Dawn Mannay - 2014 - Journal of Corporate Citizenship 54:109-116.
    In the last decade there has been a movement towards facilitating Open Access to academic outputs via the World Wide Web. This movement has been characterised as one that embodies corporate citizenship because such sharing has the potential to benefit all stakeholders: academics, policy makers, charitable sectors and the wider public. In the UK, the Economic and Social Research Council are implementing Open Access compliance guidelines for research that they fund, which is interpreted by individual institutions in their school regulations. (...)
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  46. Regulative Rules: A Distinctive Normative Kind.Reiland Indrek - forthcoming - Philosophy and Phenomenological Research.
    What are rules? In this paper I develop a view of regulative rules which takes them to be a distinctive normative kind occupying a middle ground between orders and normative truths. The paradigmatic cases of regulative rules that I’m interested in are social rules like rules of etiquette and legal rules like traffic rules. On the view I’ll propose, a rule is a general normative content that is in force due to human activity: enactment by an authority or acceptance (...)
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  47. Data management practices in Educational Research.Valentine Joseph Owan & Bassey Asuquo Bassey - 2019 - In P. N. Ololube & G. U. Nwiyi (eds.), Encyclopedia of institutional leadership, policy, and management: A handbook of research in honour of Professor Ozo-Mekuri Ndimele. Port Harcourt, Nigeria: pp. 1251-1265.
    Data is very important in any research experiment because it occupies a central place in making decisions based on findings resulting from the analysis of such data. Given its central role, it follows that such an important asset as data, deserve effective management in order to protect the integrity and provide an opportunity for effective problem-solving. The main thrust of this paper was to examine data management practices that should be adopted by scholars in maintaining the (...)
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  48. Oikopolitics, regulation and privacy: An essay on the governmental nature of the right to private life.Muhammad Ali Nasir - 2019 - Philosophy and Social Criticism 45 (3):334-355.
    This essay focuses on the interrelationship of regulation and private life in human rights. It argues three main points. Article 8 connects the question of protection of private lives and privacies with the question of their management. Thus, Article 8 orients regulatory practices to private lives and privacies. Article 8’s holders are autonomous to the extent that laws respect their private lives and privacies. They are not autonomous in a ‘pre-political’ sense, where we might expect legal rules to (...)
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  49. Emotion regulation in psychopathy.Helen Casey, Robert D. Rogers, Tom Burns & Jenny Yiend - 2013 - Biological Psychology 92:541–548.
    Emotion processing is known to be impaired in psychopathy, but less is known about the cognitive mechanisms that drive this. Our study examined experiencing and suppression of emotion processing in psychopathy. Participants, violent offenders with varying levels of psychopathy, viewed positive and negative images under conditions of passive viewing, experiencing and suppressing. Higher scoring psychopathics were more cardiovascularly responsive when processing negative information than positive, possibly reflecting an anomalously rewarding aspect of processing normally unpleasant material. When required to experience emotional (...)
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  50. How Data Governance Principles Influence Participation in Biodiversity Science.Beckett Sterner & Steve Elliott - 2023 - Science as Culture.
    Biodiversity science is in a pivotal period when diverse groups of actors—including researchers, businesses, national governments, and Indigenous Peoples—are negotiating wide-ranging norms for governing and managing biodiversity data in digital repositories. These repositories, often called biodiversity data portals, are a type of organization for which governance can address or perpetuate the colonial history of biodiversity science and current inequities. Researchers and Indigenous Peoples are developing and implementing new strategies to examine and change assumptions about which agents should count (...)
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