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Limits of data anonymity: lack of public awareness risks trust in health system activities

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Public trust is paramount for the well functioning of data driven healthcare activities such as digital health interventions, contact tracing or the build-up of electronic health records. As the use of personal data is the common denominator for these healthcare activities, healthcare actors have an interest to ensure privacy and anonymity of the personal data they depend on. Maintaining privacy and anonymity of personal data contribute to the trustworthiness of these healthcare activities and are associated with the public willingness to trust these activities with their personal data. An analysis of online news readership comments about the failed care.data programme in England revealed that parts of the public have a false understanding of anonymity in the context of privacy protection of personal data as used for healthcare management and medical research. Some of those commenting demanded complete anonymity of their data to be willing to trust the process of data collection and analysis. As this demand is impossible to fulfil and trust is built on a false understanding of anonymity, the inability to meet this demand risks undermining public trust. Since public concerns about anonymity and privacy of personal data appear to be increasing, a large-scale information campaign about the limits and possibilities of anonymity with respect to the various uses of personal health data is urgently needed to help the public to make better informed choices about providing personal data.

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Аnalysis of recent researches and publications. The problems of legal protection of personal data have recently become the subject of research by an increasing number of scientists, both lawyers and representatives of other fields of knowledge. In particular, such scientists as: S. Hlibko, T. Egorova-Lutchenko, K. Yefremova, O. Korvat, V. Kokhan, M. Haustova devote their attention to the study of these issues. etc. Purpose of the research is to develop possible ways of legal protection of personal data in view of today’s challenges related to this issue. The article aims to consider the development of technologies and the growth of the volume of personal data as the main factors affecting the need for effective protection of privacy and security of this data. The article is aimed at expanding the understanding of the problem and providing recommendations for improving the protection of privacy and security of personal data in the future. article’s main body. According to the preamble to the Agreement between Ukraine and the European Union on the participation of Ukraine in the European Union program “Digital Europe” (2021-2027), the important supporting role of digital infrastructure, including in the field of cyber security, is recognized to ensure inextricably linked transformation processes and digital leadership of the European Union. The purpose of concluding the Agreement is to establish mutually beneficial cooperation in order to strengthen and support the deployment of reliable and secure digital capabilities in the Union in the field, including cyber security. It is recognized that mutual participation in each other’s programs for the implementation of digital technologies should ensure mutual benefits for the Parties, while observing a high level of data protection, digital rights, etc. In accordance with paragraph 12 of Article 2 of Annex III to the Agreement, the exchange of information between the European Commission or OLAF and the competent state authorities of Ukraine must take place with due consideration of confidentiality requirements. Personal data included in the exchange of information must be transferred in accordance with the current legal norms on data protection of the Party making the transfer. According to paragraph 49 of the preamble of Regulation (EU) 2021/694 of the European Parliament and of the Council of April 29, 2021 on the establishment of the Digital Europe Program, digital transformation should allow citizens to access, use and securely manage their personal data across borders, regardless of their location or data location. According to point 60 of the preamble, by providing a single set of rules that are directly applicable in the legal systems of the Member States, Regulation (EU) 2016/679 guarantees the free flow of personal data between Member States and strengthens the trust and security of individuals, two indispensable elements of a true Digital Single Market . All actions taken within the framework of the Program, which involve the processing of personal data, must contribute to the smooth implementation of this Regulation, for example, in the field of artificial intelligence and distributed ledger technologies (for example, blockchain). These actions should support the development of digital technologies that meet data protection obligations both by design and by default. In addition, according to paragraph 69 of the preamble, this Regulation respects fundamental rights and adheres to the principles recognized in the Charter of Fundamental Rights of the European Union, in particular regarding the protection of personal data, etc. In the Charter of Fundamental Rights of the European Union (2016/C 202/02) dated June 7, 2016, Chapter II “Freedoms” contains Article 8, which is entitled “Protection of personal data”, according to which it is assumed that everyone has the right to the protection of personal data data concerning him. Such data must be processed fairly for specific purposes and on the basis of the consent of the person concerned or on another legal basis established by law. Everyone has the right to access the data that has been collected about him and the right to correct it. Compliance with these rules is subject to control by an independent body. In addition, Regulation (EU) 2016/679 of the European Parliament and of the Council of April 27, 2016 on the protection of natural persons with regard to the processing of personal data and on the free movement of such data establishes rules relating to the protection of natural persons with regard to the processing of personal data, as well as rules, relating to the free movement of personal data, and protects the fundamental rights and freedoms of natural persons and, in particular, their right to protection of personal data. Today in Ukraine, the main legislative act in this area is the Law of June 1, 2010 No. 2997-VI “On the Protection of Personal Data”. Article 11 of the Law of Ukraine “On Information” specifies what information about a natural person (personal data) is. In turn, the legal and organizational bases for ensuring the protection of the vital interests of a person and citizen, society and the state, national interests of Ukraine in cyberspace, the main goals, directions and principles of state policy in the field of cyber security, the powers of state bodies, enterprises, institutions, organizations, individuals and citizens in this area, the basic principles of coordination of their cyber security activities are defined in the Law of Ukraine “On Basic Principles of Cyber Security of Ukraine”. In addition, relations in the field of information protection in information, electronic communication and information and communication systems are regulated by the Law of Ukraine “On the Protection of Information in Information and Communication Systems”. In turn, the Concept of the development of e-governance in Ukraine, as well as the Law of Ukraine “On the National Informatization Program” defines e-governance. In addition, in 2021, the Law of Ukraine “On Public Electronic Registers” was adopted, which defines the State electronic platform for maintaining public electronic registers. On April 18, 2023, by a resolution of the Cabinet of Ministers of Ukraine, the Regulation on the information system “Software platform for the deployment and support of state electronic registers” was approved, as well as the Procedure for using the software “Software platform for the deployment and support of state electronic registers”. conclusions and prospects for the development. The protection of digital personal data requires the development of appropriate technical and regulatory tools, as well as judicial practice of prosecution for violations of the order of their use. It is possible to create a database or registry for private electronic/digital platforms, with the help of which or which would control their activities, including regarding the protection of personal data. At the same time, at the regulatory and legal level, it is necessary to provide that a mandatory condition for the creation and functioning of an Internet platform is its registration in such a database / such a register, and a mandatory condition for registration is confirmation of technical capabilities to ensure the protection of personal data of platform users. It is necessary to define at the regulatory level the list and mechanisms of acquisition of digital rights, their implementation, protection, compensation and responsibility for their violation. The protection of personal data should be considered one of the digital rights of a person and a citizen. The development of digitalization in a legal state must inevitably be accompanied by the development of the legal framework, in particular, the emergence, consolidation, definition and protection of digital rights of individuals and legal entities. Digital rights are a multifaceted category, they become connected and interwoven with other rights defined and established in the norms of different branches of law. The multifaceted nature of the “digital rights” category implies the separation and delimitation of various categories of digital rights, their distribution into appropriate types, for example, “personal digital rights”, “financial digital rights”, etc. It should be quite natural to form a separate element in the general system of law, such as digital law, as a set of legal norms regulating social relations related to the circulation of (including personal) data in digital networks.

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Yapay Zekâ Çağında Kişisel Veri Mahremiyeti
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The development of technology accelerated the digital transformation of information systems. As a consequence of this digitization, data became available at any time and in any place. However, despite this ease of data accessibility, persons’ privacy concerns and threats to data privacy have emerged. Thus, serious privacy problems arise while collecting, storing, accessing, sharing, and archiving personal data. Consent management aims to prevent these problems by preserving privacy and protecting personal data. Hence, there are international treaties and legal regulations for personal data protection which state that consent is required to collect, store, manage and share personal data. In this study, a Semantic Web-based personal consent management model is proposed to protect personal data privacy. The proposed model is domain-independent and aims to control and manage the consent of a person. In order to provide the privacy protection of personal data, the proposed model allows individuals to establish their privacy preferences by determining who can access their personal information, for what purposes, and under what circumstances. For this purpose, a group of ontology is created to ensure the informed consent process. The proposed consent management model is generic. As similar to general personal information, personal health information is also sensitive and must be protected from data leakage. Therefore, the proposed generic model is implemented with Semantic Web technologies and demonstrated for the healthcare domain.

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  • 10.2139/ssrn.3357990
Healthy Data Protection
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Healthy Data Protection

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  • 10.54648/gplr2024016
Electronically Processed Personal Health Data Privacy Protection in the UAE: An Analytical Study
  • Aug 1, 2024
  • Global Privacy Law Review
  • Tariq Kameel + 2 more

This research addressed the importance of a sensitive issue that concerns all members of society, which is personal health data and information, which means of information and communication technology (ICT) have become playing an important, even essential, role in preserving, storing and processing them, which requires the necessity of preserving the privacy of that data and information from any attack that may occur. or accessed by persons who may misuse it, causing harm to the owner of that data.The aim of this research is to clarify the role of the Emirati legislator in protecting the privacy of personal health data processed electronically, as it became clear to us that the legislator worked to establish the necessary controls that frame the use of information and communications technology means in a way that ensures the preservation of the privacy of personal health data. It also stressed the protection of private information and data. The patient is considered to be of a confidential nature, and is prohibited from using and accessing it except after obtaining written consent from the patient or his/her legal representative, in addition to cases that the legislator has excluded for economic, scientific, social, or judicial purposes. Finally, the penalty resulting from breaching the rules for protecting such data has been stated.

  • Research Article
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PERLINDUNGAN HUKUM TERHADAP PRIVASI DATA PRIBADI DI ERA DIGITAL
  • Jun 3, 2025
  • The Juris
  • Ridho Sadillah Ahmad + 2 more

In an increasingly fast-paced and connected digital era, the protection of personal data privacy has become a very urgent and complex issue. Information and communication technologies have facilitated the widespread collection, storage and distribution of personal data, presenting new challenges to the protection of privacy rights, particularly in Indonesia. This phenomenon is exacerbated by various cases of data leakage and misuse of personal information that emphasize the importance of a strong and effective legal framework to protect individual privacy. This study aims to evaluate the effectiveness of existing regulations, such as Article 26 of the ITE Law and PP PSTE, in protecting personal data privacy in Indonesia, and to examine the draft personal data protection law (RUU PDP) which is expected to provide more comprehensive protection. The research method used is a normative juridical approach, with literature study as the main tool for collecting data. The results show that although the existing regulations already provide an important legal foundation, there are still weaknesses in implementation and law enforcement. Lack of public awareness about privacy rights, as well as weak law enforcement against data privacy violations, are the main obstacles in the protection of personal data privacy. The conclusion of this study is that improvements in regulation, stricter law enforcement, and better education to the public are needed to improve the protection of personal data privacy. The PDP Bill is expected to address some of these weaknesses by providing a clearer and more comprehensive legal framework.

  • Research Article
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Taiwanese Media reporting COVID-19 disinformation crisis: A mixed-method study of technological epidemic prevention regarding health personal data, privacy and security issues
  • Jun 1, 2023
  • 中華傳播學刊
  • 林翠絹 林翠絹

<p>本混合法研究檢視2020年初臺灣媒體報導新冠肺炎疫情假訊息內容,分析數位防疫之個資、隱私與資安議題呈現趨勢及新聞框架運用。大數據分析顯示:有別於西方報導,臺灣疫情假訊息新聞甚少關注防疫個資與隱私,對資安議題較為重視。公衛危機新聞框架內容分析結果發現:科技防疫報導最常用行動框架,後果與保證框架次之,負面框架(衝突與不確定)較少。個資、隱私和資安報導,及大部分新聞框架選擇,隨著疫情時期變化,呈現顯著性差異。</p> <p> </p><p>As COVID-19 was the first global pandemic of the digital age, many countries utilized information technologies and big data as technological epidemic prevention measures which led to controversies regarding personal data misuse, privacy invasion, and security risks. The mixed-method study used big data and content analysis to examine Taiwanese news reports related to personal data, privacy, and security issues in early COVID-19 outbreak. In contrast to Western studies, the results revealed that Taiwanese media reports, under infodemic influences, emphasized the importance of data security over that of protecting personal data and data privacy. Based on news framing of public health crisis, content analysis results showed the dominant use of action framing was followed by consequence and assurance framing, whereas negative framing (conflict and uncertainty) was rarely employed. The news reports about personal data, privacy, and security found statistical differences among three epidemic periods, as did their selection of news framing.</p> <p> </p>

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