scholarly journals Evaluating privacy of individuals in medical data

2021 ◽  
Vol 27 (2) ◽  
pp. 146045822098339
Author(s):  
Shannon KS Kroes ◽  
Mart P Janssen ◽  
Rolf HH Groenwold ◽  
Matthijs van Leeuwen

Although data protection is compulsory when personal data is shared, there is no systematic method available to evaluate to what extent each individual is at risk of a privacy breach. We use a collection of measures that quantify how much information is needed to uncover sensitive information. Combined with visualization techniques, our approach can be used to perform a detailed privacy analysis of medical data. Because privacy is evaluated per variable, these adjustments can be made while incorporating how likely it is that these variables will be exploited to uncover sensitive information in practice, as is mandatory in the European Union. Additionally, the analysis of privacy can be used to evaluate to what extent knowledge on specific variables in the data can contribute to privacy breaches, which can subsequently guide the use of anonymization techniques, such as generalization.

2019 ◽  
Vol 18 (25) ◽  
pp. 2165-2173 ◽  
Author(s):  
Aliuska Duardo-Sánchez ◽  
Iñigo De Miguel Beriain

In the last few years, the fields of Medicinal Chemistry and especially the ones related to the so-called Personalized Medicine, have received a great attention. Significant investment and remarkable researches surround the matter; however, not all those promising advances are reaching patients as quickly as they should. The absence of an adequate regulatory framework could be of no help. The complete and/or massive sequencing of individual genomes faces many ethical-legal challenges. Some of them are access to Personalized Medicine; the treatment of a large volume of sensitive information and the use of tools produced by "big data" systems in clinical care or in predictive models. In addition, the legal protection of personal data related to health, the exercise of autonomy by patients, closely related to the regulation regarding clinical trials, are seriously involved. Our purpose of this work is to review the regulations of the European Union, in an attempt to contribute to a better understanding of the legal framework for the implementation and development of health systems based on Personalized Medicine.


Hypertension ◽  
2021 ◽  
Vol 77 (4) ◽  
pp. 1029-1035
Author(s):  
Antonia Vlahou ◽  
Dara Hallinan ◽  
Rolf Apweiler ◽  
Angel Argiles ◽  
Joachim Beige ◽  
...  

The General Data Protection Regulation (GDPR) became binding law in the European Union Member States in 2018, as a step toward harmonizing personal data protection legislation in the European Union. The Regulation governs almost all types of personal data processing, hence, also, those pertaining to biomedical research. The purpose of this article is to highlight the main practical issues related to data and biological sample sharing that biomedical researchers face regularly, and to specify how these are addressed in the context of GDPR, after consulting with ethics/legal experts. We identify areas in which clarifications of the GDPR are needed, particularly those related to consent requirements by study participants. Amendments should target the following: (1) restricting exceptions based on national laws and increasing harmonization, (2) confirming the concept of broad consent, and (3) defining a roadmap for secondary use of data. These changes will be achieved by acknowledged learned societies in the field taking the lead in preparing a document giving guidance for the optimal interpretation of the GDPR, which will be finalized following a period of commenting by a broad multistakeholder audience. In parallel, promoting engagement and education of the public in the relevant issues (such as different consent types or residual risk for re-identification), on both local/national and international levels, is considered critical for advancement. We hope that this article will open this broad discussion involving all major stakeholders, toward optimizing the GDPR and allowing a harmonized transnational research approach.


Author(s):  
Marek Świerczyński

Disputes arising from international data breaches can be complex. Despite the introduction of new, unified EU regulation on the protection of personal data (GDPR), the European Union failed to amend the Rome II Regulation on the applicable law to non-contractual liability and to extend its scope to the infringements of privacy. GDPR only contains provisions on international civil procedure. However, there are no supplementing conflict-of-law rules. In order to determine the applicable law national courts have to apply divergent and dispersed national codifications of private international law. The aim of this study is to propose an optimal conflict-of-law model for determining the applicable law in case of infringement of the GDPR’s privacy regime.


2019 ◽  
Vol 5 (2) ◽  
pp. 75-91
Author(s):  
Alexandre Veronese ◽  
Alessandra Silveira ◽  
Amanda Nunes Lopes Espiñeira Lemos

The article discusses the ethical and technical consequences of Artificial intelligence (hereinafter, A.I) applications and their usage of the European Union data protection legal framework to enable citizens to defend themselves against them. This goal is under the larger European Union Digital Single Market policy, which has concerns about how this subject correlates with personal data protection. The article has four sections. The first one introduces the main issue by describing the importance of AI applications in the contemporary world scenario. The second one describes some fundamental concepts about AI. The third section has an analysis of the ongoing policies for AI in the European Union and the Council of Europe proposal about ethics applicable to AI in the judicial systems. The fourth section is the conclusion, which debates the current legal mechanisms for citizens protection against fully automated decisions, based on European Union Law and in particular the General Data Protection Regulation. The conclusion will be that European Union Law is still under construction when it comes to providing effective protection to its citizens against automated inferences that are unfair or unreasonable.


2017 ◽  
Vol 17 (1) ◽  
pp. 45
Author(s):  
Endre Győző Szabó ◽  
Balázs Révész

A magánélet és a biztonság népszerű ellentétpárként tűnhet fel az adatvédelmi gondolkodásban. Leegyszerűsítve olvashatjuk sokszor, hogy ha bizonyos feltételek hiányoznak, aránytalanul nagy áldozatot hozhatunk a személyes magánszféra, a privacy oldalán a biztonság érdekében, és magánszféránk túlzott feláldozása a biztonság oltárán visszafordíthatatlan folyamathoz és orwelli világhoz vezet. Más, a biztonság szempontjait mindenek felettinek hirdető érvelésben viszont a személyes adatok védelmére való hivatkozást alkotmányjogi bűvészkedésnek csúfolják és igyekeznek kisebbíteni a magánszféra-védelem egyébként méltányolandó értékeit. A magánélet és a személyes adatok védelmének pedig nagy a tétje, az adatok illetéktelenek részére való kiszolgáltatása, rosszhiszemű felhasználása egzisztenciákat, családokat tehet tönkre, boldogulási lehetőségeket hiúsíthat meg, ha a védelem alacsony szintre süllyed. Másrészről pedig az információszerzés, illetve előzetes adatgyűjtés a különböző bűnelkövetések, terrorcselekmények előkészületi cselekményei is egyben. Azzal, ha a személyes adataink, magánszféránk védelmében ésszerű lépéseket teszünk, élünk a jog és a technológia adta védelmi lehetőségekkel, adatainkat nemcsak az államtól és a piaci szereplőktől, de a bűnözőktől is elzárjuk, és ezzel mindannyiunk biztonságát szolgáljuk. Egy terület tehát biztosan létezik, ahol a biztonság és magánszféra mezsgyéje összeér: az adatbiztonságé és ezzel összefüggésben a tudatos, felelős felhasználói attitűdé, aminek azonban sokszor az emberi tényező a gátja. Jelen tanulmányban a magánszféra és biztonság kérdéskörének komplexitásáról szólunk, és közös nevezőt keresünk az adatkezelések nézőpontjából, kitérve az új adatvédelmi rendelet (GDPR) magánszféránkat és biztonságunkat egyaránt szolgáló leendő jogintézményeinek bemutatására is. --- Data in security – security in our data? Privacy and security may be deemed as a popular dichotomy. It is often argued that even if security is vital, we might sacrifice too much of our privacy in return. This may be irreversible when it comes to the intrusiveness of surveillance. On the other hand, it is also sometimes argued that the importance of personal data protection deserves less attention than security. There is much at stake when it comes to privacy and the protection of personal data. Misuse of personal information may damage families’ lives and ruin people’s livelihoods, thus this may all have significant repercussions for society as a whole – this is the price to be paid if protection is at a low level. Using sophisticated measures that technology and legal regulations can provide, privacy can be protected. Data security is a common field for the protection of privacy and security – crucial for both endeavours to make people’s lives better. This essay describes the complexity of issues related to privacy and security, while also taking new legislation of the European Union into account.


2020 ◽  
pp. 36-50
Author(s):  
Olga O. Bazina

Biometrics, as a field of science, analyzes the physical and behavioral characteristics of people in order to identify their personality. A huge amount of technology in the field of biometric data collection is developed by IT giants like Google, Facebook, or Alibaba. The European Union (EU) took an important step towards biometric data confidentiality by developing a unified law on the protection of personal data (General Data Protection Regulation, GDPR). The main goal of this action is to return control over personal data to European citizens and at the same time simplify the regulatory legal basis for companies. While European countries and organisations are introducing the GDPR into force, China since 2016 has launched a social credit system as a pilot project. The Social Credit Score (SCS) is based on collecting the maximum amount of data about citizens and assessing the reliability of residents based on their financial, social and online behavior. Only critical opinions can be read about the social credit system in European literature, although the opinions of persons being under this system – Chinese citizens – are quite positive. In this context, we should not forget about the big difference in the mentality of Asians and Europeans. The aim of this article is to compare EU law and the legislation of the People's Republic of China regarding the use and storage of biometric data. On the basis of statistical data and materials analysed, key conclusions will be formulated, that will allow to indicate differences in the positions of state institutions and the attitude of citizens to the issue of personal data protection in China and the European Union.


2020 ◽  
pp. 80-85
Author(s):  
Tetiana Yehorova-Lutsenko

Problem setting. The rapid development of public relations determines the use of information technology in all spheres of life, including in the field of public administration. There is no doubt about the need to introduce elements of e-government into everyday life, as it improves the lives of ordinary citizens, increases trust in public authorities and local governments, reduces the time spent on businesses and individuals needed to receive services. Analysis of recent research. The issue of providing digital social services was paid attention to by, V.P Kohan, M.M. Petrova, N.M. Terletska, D.I. Rusnak, V.L. Polar, V.V. Ripples. The formation of an appropriate mechanism for the digital provision of social administrative services in Ukraine remains unresolved. Target of research. The article is to define the tasks for the formation of the administrative and legal mechanism and the use of digitalization in the provision of social administrative services. Article’s main body. New online services are being introduced on the territory of Ukraine, which enable consumers to receive it remotely. In our opinion, in the future, these services should simplify the procedure for accessing them, given the subjects who are primarily interested in using them, and expand the scope of their provision: from informing the consumer to receiving the result. But these tasks can be accomplished only with the proper financial and material support of local governments, including the poorest financially united territorial communities. In addition, local governments should be required to retain technical specialists and consultants who will provide software and hardware for the provision of administrative social services and eliminate the inability of certain segments of the population to use high-tech digital services. These tasks should be attributed to those that require constant monitoring of their implementation and improvement of their mechanism. Features of the regime of social services are that: 1) their list is not defined by law, so it is more determined by the subjects – recipients of services; 2) socialization of services involves the organization of simplified access of citizens to administrative services; 3) the mechanism for providing accessible social services must ensure the protection of personal data of service recipients. Conclusions and prospects for the development. The unification of types of social administrative services and mechanisms of their provision with similar services provided in the countries of the European Union may be key to Ukraine’s progress towards a single digital space with the European Union.


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