Reflections on Turkish Personal Data Protection Law and Genetic Data in Focus Group Discussions

Download

index.pdf

Date

2022-12-01

Author

Özkan, Özlem
Şahinol, Melike
Aydınoğlu, Arsev Umur
Aydın Son, Yeşim

Metadata

Show full item record

This work is licensed under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License.

Item Usage Stats

260
views

97
downloads

Since the 1970s and more rigorously since the 1990s, many countries have regulated data protection and privacy laws in order to ensure the safety and privacy of personal data. First, a comparison is made of different acts regarding genetic information that are in force in the EU, the USA, and China. In Turkey, changes were adopted only recently following intense debates. This study aims to explore the experts’ opinions on the regulations of the health information systems, data security, privacy, and confidentiality in Turkey, with a particular focus on genetic data, which is more sensitive than other health data as it is a permanent identifier that is inherited to next of kin and shared with other family members. Two focus groups with 18 experts and stakeholders were conducted, discussing topics such as central data collection, legalized data sharing, and the management of genetic information in health information systems. The article concludes that the new Turkish personal data protection law is problematic as the frame of collectible data is wide-ranging, and the exceptions are extensive. Specific laws or articles dedicated to genetic data that also overlook the dimension of discrimination based on genetic differences in Turkey should be taken into consideration. In broader terms, it is intended to put up for discussion that in addition to ethical aspects, economic aspects and legal aspects of health should be included in the discussion to be carried out within the framework of socio-political analyses with culture-specific approaches and cross-culture boundaries simultaneously.

Subject Keywords

Data privacy, Data protection, Focus group, Genetic data, Turkish personal data protection law

URI

https://hdl.handle.net/11511/101774

Journal

NanoEthics

DOI

https://doi.org/10.1007/s11569-022-00431-0

Collections

Graduate School of Social Sciences, Article

Suggestions

OpenMETU
Core

Optimal data compression for lifetime maximization in wireless sensor networks operating in stealth mode Incebacak, Davut; Zilan, Ruken; TAVLI, BÜLENT; Barcelo-Ordinas, Jose M.; Garcia-Vidal, Jorge (2015-01-01) Contextual privacy in Wireless Sensor Networks (WSNs) is concerned with protecting contextual information such as whether, when, and where the data is collected. In this context, hiding the existence of a WSN from adversaries is a desirable feature. One way to mitigate the sensor nodes' detectability is by limiting the transmission power of the nodes (Le., the network is operating in the stealth mode) so that adversaries cannot detect the existence of the WSN unless they are within the sensing range of the ...
An Assessment of big data policies and big data maturity in public administration in Turkey Okuyucu, Aras; Yavuz, Nilay; Department of Political Science and Public Administration (2018) Governments have been the largest data collectors since the beginning of their existence. For this reason, big data applications play an important role in public administration. This thesis aims to assess big data policies and big data maturity in public administration in Turkey. In the study, a literature analysis was performed first to understand the use of big data in public administration. In the light of the analysis, big data maturity models were then examined to inform the development of big data pol...
Students' informal statistical inferences through data modeling with a large multivariate dataset Kazak, Sibel; Fujita, Taro; Turmo, Manoli Pifarre (2023-01-01) In today's age of information, the use of data is very powerful in making informed decisions. Data analytics is a field that is interested in identifying and interpreting trends and patterns within big data to make data-driven decisions. We focus on informal statistical inference and data modeling as a means of developing students' data analytics skills in school. In this study, we examine how students apply the data modeling process to draw informal inferences when exploring trends, patterns and relationsh...
Automatic detection of cyber security events from Turkish twitter stream and Turkish newspaper data Ural, Özgür; Acartürk, Cengiz; Department of Cyber Security (2019) Cybersecurity experts scan the internet and face security events that influence users, institutions, and governments. An information security analyst regularly examines sources to stay up to date on security events in her/his domain of expertise. This may lead to a heavy workload for the information analysts if they do not have proper tools for security event investigation. For example, an information analyst may want to stay aware of cybersecurity events, such as a DDoS (Distributed Denial of Service) atta...
Securing freedom of movement of persons in the EU : a governmentality perspective Arcan, Özge; Ertuğrul, Kürşad; Department of Political Science and Public Administration (2010) This thesis examines how the right of free movement of persons is governed through surveillance databases represented as security measures by applying the governmentality perspective. In order to do that, the study focuses on the relationship between freedom of movement, security and surveillance databases in the European Union such as Schengen Information System (SIS), European Dactylographic System (EURODAC) and the Europol Computer System (TECS). The main argument of the thesis is to analyze the role of ...

Citation Formats

Ö. Özkan, M. Şahinol, A. U. Aydınoğlu, and Y. Aydın Son, “Reflections on Turkish Personal Data Protection Law and Genetic Data in Focus Group Discussions,” NanoEthics, vol. 16, no. 3, pp. 297–312, 2022, Accessed: 00, 2023. [Online]. Available: https://hdl.handle.net/11511/101774.