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

Şık A. S., Aydınoğlu A. U., Aydın Son Y.

HEALTH POLICY, cilt.125, sa.2, ss.203-212, 2021 (SCI-Expanded) identifier identifier identifier

  • Yayın Türü: Makale / Tam Makale
  • Cilt numarası: 125 Sayı: 2
  • Basım Tarihi: 2021
  • Doi Numarası: 10.1016/j.healthpol.2020.12.004
  • Dergi Adı: HEALTH POLICY
  • Derginin Tarandığı İndeksler: Science Citation Index Expanded (SCI-EXPANDED), Social Sciences Citation Index (SSCI), Scopus, ASSIA, International Bibliography of Social Sciences, PASCAL, Periodicals Index Online, Business Source Elite, Business Source Premier, CAB Abstracts, CINAHL, EMBASE, MEDLINE, PAIS International, Public Affairs Index, Veterinary Science Database
  • Sayfa Sayıları: ss.203-212
  • Anahtar Kelimeler: Genetic test data representation in Turkey's, EHR, Rules and Regulations about Genetic, Testing in Turkey, Genomic data management, Turkish EHR, CANCER, GENOMICS, EMERGE, RECORD, CARE
  • Orta Doğu Teknik Üniversitesi Adresli: Evet

Özet

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. (c) 2020 Elsevier B.V. All rights reserved.