Show/Hide Menu
Hide/Show Apps
Logout
Türkçe
Türkçe
Search
Search
Login
Login
OpenMETU
OpenMETU
About
About
Open Science Policy
Open Science Policy
Open Access Guideline
Open Access Guideline
Postgraduate Thesis Guideline
Postgraduate Thesis Guideline
Communities & Collections
Communities & Collections
Help
Help
Frequently Asked Questions
Frequently Asked Questions
Guides
Guides
Thesis submission
Thesis submission
MS without thesis term project submission
MS without thesis term project submission
Publication submission with DOI
Publication submission with DOI
Publication submission
Publication submission
Supporting Information
Supporting Information
General Information
General Information
Copyright, Embargo and License
Copyright, Embargo and License
Contact us
Contact us
Assessing the readiness of Turkish health information systems for integrating genetic/genomic patient data: System architecture and available terminologies, legislative, and protection of personal data.
Date
2020-12-08
Author
Şık, Ayhan Serkan
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
352
views
0
downloads
Cite This
Advances in genetic/genomic research and translational studies drive the progress on molecular diagnosis, personalised treatment, and monitoring. Healthcare professionals and governments are encouraged to set administrative regulations and implement structured and interoperable representation to utilise the genetic/genomic data, which will support precision medicine approaches through Health Information Systems (HIS). Clear regulations and careful legislation are also crucial for the security and privacy of genetic/genomic test data. In this article, we present a review of the National Health Information System of Turkey (NHIS-T) about interoperable health data representation for genetic tests. We discuss the content of rules and regulations related to genetic/genomic testing and structured data representation in Turkey. A brief comparison of the Turkish “Law on the Protection of Personal Data” (LPPD) in genetic/genomic data privacy with its counterparts is presented. The final discussion about the shortcomings of Turkey is transferable to health information systems worldwide. Constructing a national reference database and IT infrastructure to enable data integration and exchange between genomic data, metadata, and health records will improve genetics studies’ utility and outcomes. The critical success factors behind integration are establishing broadly accepted terminologies and government guidance. The governments should set clear a transparent policy defining the legal and ethical framework, workforce training, clinical decision-support tools, public engagement, and education concurrently.
Subject Keywords
Health Policy
,
Genetic test data representation in Turkey’s EHR
,
Rules and Regulations about Genetic Testing in Turkey
,
Genomic data management
,
Turkish EHR
URI
https://hdl.handle.net/11511/88581
Journal
Health policy (Amsterdam, Netherlands)
DOI
https://doi.org/10.1016/j.healthpol.2020.12.004
Collections
Graduate School of Informatics, Article
Suggestions
OpenMETU
Core
Security and Privacy Concerns Regarding Genetic Data in Mobile Health Record Systems: An Empirical Study from Turkey
Özkan, Özlem; Aydın Son, Yeşim; Aydınoğlu, Arsev Umur (2019-06-01)
With the increasing use of genetic testing and applications of bioinformatics in healthcare, genetic and genomic data needs to be integrated into electronic health systems. We administered a descriptive survey to 174 participants to elicit their views on the privacy and security of mobile health record systems and inclusion of their genetic data in these systems. A survey was implemented online and on site in two genetic diagnostic centres. Nearly half of the participants or their close family...
Providing Semantic Interoperability Between Clinical Care and Clinical Research Domains
Laleci, Gokce Banu; Yuksel, Mustafa; Doğaç, Asuman (2013-03-01)
Improving the efficiency with which clinical research studies are conducted can lead to faster medication innovation and decreased time to market for new drugs. To increase this efficiency, the parties involved in a regulated clinical research study, namely, the sponsor, the clinical investigator and the regulatory body, each with their own software applications, need to exchange data seamlessly. However, currently, the clinical research and the clinical care domains are quite disconnected because each use ...
A multi-layered graphical model of the relation among SNPS, GENES, and pathways based on subgraph search
Ersoy, Gökhan; Aydın Son, Yeşim; Can, Tolga; Department of Bioinformatics (2015)
The analysis of Single Nucleotide Polymorphisms (SNPs) through Genome Wide Association Studies (GWAS) presents great potential for describing disease loci and gaining insight into the underlying etiology of diseases. Recently described combined p-value approach allows identification of associations at gene and pathway level. The integrated programs like METU-SNP produce simple lists of either SNP id/gene id/pathway title and their p-values and significance status or SNP id/disease id/pathway information. In...
Targeted delivery of CPG-oligodeoxynucleotide to breast cancer cells by poly-amidoamine dendrimer-modified magnetic nanoparticles
Taghavi Pourianazar, Negar; Gündüz, Ufuk; Gündüz, Güngör; Department of Biotechnology (2016)
One major application of nanotechnology in cancer treatment involves designing nanoparticles to deliver drugs, oligonucleotides, and genes to cancer cells. Nanoparticles should be engineered so that they could target and destroy tumor cells with minimal damage to healthy tissues. This research aims to develop an appropriate and efficient nanocarrier, having the ability of interacting with and delivering CpG-oligodeoxynucleotides (CpG-ODNs) to tumor cells. CpG-ODNs activate Toll-like receptor 9 (TLR9), which...
Improving the sub-cortical gm segmentation using evolutionary hierarchical region merging
Çiftçioğlu, Mustafa Ulaş; Gökçay, Didem; Department of Medical Informatics (2011)
Segmentation of sub-cortical Gray Matter (GM) structures in magnetic resonance brain images is crucial in clinic and research for many purposes such as early diagnosis of neurological diseases, guidance of surgical operations and longitudinal volumetric studies. Unfortunately, the algorithms that segment the brain into 3 tissues usually suffer from poor performance in the sub-cortical region. In order to increase the detection of sub-cortical GM structures, an evolutionary hierarchical region merging approa...
Citation Formats
IEEE
ACM
APA
CHICAGO
MLA
BibTeX
A. S. Şık, A. U. Aydınoğlu, and Y. Aydın Son, “Assessing the readiness of Turkish health information systems for integrating genetic/genomic patient data: System architecture and available terminologies, legislative, and protection of personal data.,”
Health policy (Amsterdam, Netherlands)
, 2020, Accessed: 00, 2021. [Online]. Available: https://hdl.handle.net/11511/88581.