Urgensi Regulasi Khusus untuk Perlindungan Data Genomik di Indonesia: Studi Perbandingan dengan GDPR dan Australian Privacy Act.
DOI:
https://doi.org/10.63142/al-battar.v2i1.156Keywords:
Genomic Data, Data Protection Regulation, Personal Data SecurityAbstract
This study aims to analyze the urgency of specific regulations for genomic data protection in Indonesia using a normative juridical approach and a comparative legal method with the European Union's General Data Protection Regulation (GDPR) and the Australian Privacy Act. Genomic data has unique characteristics that distinguish it from other personal data, requiring stricter legal protection. The analysis examines Indonesia’s Personal Data Protection Law (Law No. 27 of 2022) to identify regulatory weaknesses in ownership rights, informed consent mechanisms, data security, and cross-border data transfers. The findings reveal that Indonesia lacks explicit provisions recognizing genomic data as a special category requiring higher protection standards. Referring to best practices from the GDPR and the Australian Privacy Act, this study recommends establishing specific regulations covering data ownership protection, strengthening consent mechanisms, and enhancing oversight of genomic data security and transfers. Implementing stricter regulations is expected to safeguard individual privacy while supporting research and innovation in healthcare and biotechnology.
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References
Anggraeniko, Litya Surisdani, Laga Sugiarto, Alwi Al Hadad, dan Hesti Ayu Wahyuni. “Telaah Kajian Buku Sumber Dalam Literasi Hukum Di Era Digital.” Jurnal Pengabdian Masyarakat - PIMAS 3, no. 1 (5 Februari 2024): 18–25. https://doi.org/10.35960/pimas.v3i1.1306.
Arshad, Saadia, Junaid Arshad, Muhammad Mubashir Khan, dan Simon Parkinson. “Analysis of security and privacy challenges for DNA-genomics applications and databases.” Journal of Biomedical Informatics 119 (1 Juli 2021): 103815. https://doi.org/10.1016/j.jbi.2021.103815.
“Beware: Processing of Personal Data—Informed Consent Through Risk Communication | IEEE Journals & Magazine | IEEE Xplore.” Diakses 9 Maret 2025. https://ieeexplore.ieee.org/document/10472565.
Carter, Alexis B. “Considerations for Genomic Data Privacy and Security when Working in the Cloud.” The Journal of Molecular Diagnostics 21, no. 4 (1 Juli 2019): 542–52. https://doi.org/10.1016/j.jmoldx.2018.07.009.
Clayton, Ellen Wright, Barbara J Evans, James W Hazel, dan Mark A Rothstein. “The law of genetic privacy: applications, implications, and limitations.” Journal of Law and the Biosciences 6, no. 1 (25 Oktober 2019): 1–36. https://doi.org/10.1093/jlb/lsz007.
Clifford, Damian, dan Jef Ausloos. “Data Protection and the Role of Fairness.” Yearbook of European Law 37 (1 Januari 2018): 130–87. https://doi.org/10.1093/yel/yey004.
Conference, AABHL. “Legal Privacy Protections of Shared Genomic Data in International Research Collaborations – ‘Transplants’ or ‘Irritants’? -,” 3 Oktober 2023. https://aabhlconference.com/5887/.
Craig, Nancy L., Rachel Green, Carol Greider, Gisela Storz, Cynthia Wolberger, dan Orna Cohen-Fix. “Genomes and the Flow of Biological Information.” Dalam Molecular Biology. Oxford University Press. Diakses 9 Maret 2025. https://www.oxfordsciencetrove.com/display/10.1093/hesc/9780198788652.001.0001/isbn-9780198788652-book-part-1.
Dart, Martin, dan Mohiuddin Ahmed. “Australia’s Notifiable Data Breach Scheme: An Analysis of Risk Management Findings for Healthcare.” Dalam Health Information Science, disunting oleh Yan Li, Zhisheng Huang, Manik Sharma, Lu Chen, dan Rui Zhou, 65–78. Singapore: Springer Nature, 2023. https://doi.org/10.1007/978-981-99-7108-4_6.
“Deoxyribonucleic Acid (DNA) Fact Sheet.” Diakses 9 Maret 2025. https://www.genome.gov/about-genomics/fact-sheets/Deoxyribonucleic-Acid-Fact-Sheet.
Dewantoro, Auraga, Widia Citra Anggundari, Umi Nuraeni, Bambang Prasetya, dan Yopi Yopi. “Metode Deteksi Molekuler Berbasis Genomik Dan Diagnostik Akurasinya Dalam Pengembangan Diagnostik Klinik Di Indonesia.” Pertemuan Dan Presentasi Ilmiah Standardisasi 2020 (2021). https://doi.org/10.31153/ppis.2020.92.
General Data Protection Regulation (GDPR). “Art. 9 GDPR – Processing of Special Categories of Personal Data.” Diakses 8 Maret 2025. https://gdpr-info.eu/art-9-gdpr/.
General Data Protection Regulation (GDPR). “Art. 15 GDPR – Right of Access by the Data Subject.” Diakses 9 Maret 2025. https://gdpr-info.eu/art-15-gdpr/.
Gunasekaran, Hemalatha, K. Ramalakshmi, A. Rex Macedo Arokiaraj, S. Deepa Kanmani, Chandran Venkatesan, dan C. Suresh Gnana Dhas. “Analysis of DNA Sequence Classification Using CNN and Hybrid Models.” Computational and Mathematical Methods in Medicine 2021, no. 1 (2021): 1835056. https://doi.org/10.1155/2021/1835056.
Haryono, Tri Agus, Rosidah Rosidah, Diki Permana, Bubun Bunyamin, Bubun Bunyamin, Pipit Yuliarpan, dan Yeti Kurniati. “Legal Review of the Implementation of Informed Consent in Genomic Research in Indonesia Case Study of Health Biotechnology Research.” Formosa Journal of Applied Sciences 4, no. 1 (1 Februari 2025): 281–88. https://doi.org/10.55927/fjas.v4i1.13297.
https://www.darwynhealth.com. “Peran Genetika dalam Kanker Payudara: Mutasi Gen BRCA.” DarwynHealth, 11 Oktober 2023. https://www.darwynhealth.com/cancer-care/overview-of-cancer/types-of-cancer/breast-cancer/the-role-of-genetics-in-breast-cancer-brca-gene-mutations/?lang=id.
Hudson, Kathy L., M. K. Holohan, dan Francis S. Collins. “Keeping Pace with the Times — The Genetic Information Nondiscrimination Act of 2008.” New England Journal of Medicine 358, no. 25 (19 Juni 2008): 2661–63. https://doi.org/10.1056/NEJMp0803964.
Indaryati, Yovita, I. Gusti Ayu Ketut Rachmi Handayani, dan Lego Karjoko. “The Urgency of Regulating the Protection of Indonesia’s Genetic Resources for the People’s Welfare,” 414–20. Atlantis Press, 2024. https://doi.org/10.2991/978-2-38476-218-7_69.
Kirwan, Mary, Blanaid Mee, Niamh Clarke, Aoife Tanaka, Lino Manaloto, Emma Halpin, Una Gibbons, dkk. “What GDPR and the Health Research Regulations (HRRs) Mean for Ireland: ‘Explicit Consent’—a Legal Analysis.” Irish Journal of Medical Science (1971 -) 190, no. 2 (1 Mei 2021): 515–21. https://doi.org/10.1007/s11845-020-02331-2.
“Local Bioinformatics Experts Need to Be Strengthened for Genomic Data Security - Kompas.id.” Diakses 7 Maret 2025. https://www.kompas.id/baca/english/2024/02/12/en-ahli-bioinformatika-lokal-perlu-diperkuat-demi-keamanan-data-genomik.
Malakar, Yuwan, Justine Lacey, Natalie A. Twine, Rod McCrea, dan Denis C. Bauer. “Balancing the Safeguarding of Privacy and Data Sharing: Perceptions of Genomic Professionals on Patient Genomic Data Ownership in Australia.” European Journal of Human Genetics 32, no. 5 (Mei 2024): 506–12. https://doi.org/10.1038/s41431-022-01273-w.
McGonigle, Ian. “Genomic Data and the Dividual Self.” Genetics Research 101 (Januari 2019): e12. https://doi.org/10.1017/S0016672319000107.
“Ministry of Health Collaborates with Private Sector in Indonesian Human Genomic Data Project - Kompas.id.” Diakses 7 Maret 2025. https://www.kompas.id/baca/english/2023/09/29/en-kemenkes-gandeng-swasta-dalam-proyek-data-genomik-manusia-indonesia.
Nusrat, S., T. Harbig, dan N. Gehlenborg. “Tasks, Techniques, and Tools for Genomic Data Visualization.” Computer Graphics Forum 38, no. 3 (2019): 781–805. https://doi.org/10.1111/cgf.13727.
Paltiel, Minna, Mark Taylor, dan Ainsley Newson. “Protection of Genomic Data and the Australian Privacy Act: When Are Genomic Data ‘Personal Information’?” International Data Privacy Law 13, no. 1 (29 Maret 2023): 47–62. https://doi.org/10.1093/idpl/ipad002.
Post, The Jakarta. “Genomic Data, Privacy and Equity in Health Law - Tue, August 29, 2023.” The Jakarta Post. Diakses 7 Maret 2025. https://www.thejakartapost.com/paper/2023/08/29/genomic-data-privacy-and-equity-in-health-law.html.
“Proyek Genom Manusia, Pedang Bermata Dua.” Diakses 9 Maret 2025. https://mediaindonesia.com/kolom-pakar/744347/proyek-genom-manusia-pedang-bermata-dua#google_vignette.
Rider, Renee. “GA4GH: International policies and standards for data sharing across genomic research and healthcare.” Cell Genomics, 1 Januari 2021. https://www.academia.edu/89953717/GA4GH_International_policies_and_standards_for_data_sharing_across_genomic_research_and_healthcare.
Shabani, Mahsa, dan Pascal Borry. “Rules for Processing Genetic Data for Research Purposes in View of the New EU General Data Protection Regulation.” European Journal of Human Genetics 26, no. 2 (Februari 2018): 149–56. https://doi.org/10.1038/s41431-017-0045-7.
Shabani, Mahsa, dan Luca Marelli. “Re‐identifiability of Genomic Data and the GDPR.” EMBO Reports, 24 Mei 2019. https://doi.org/10.15252/embr.201948316.
Strianese, Oriana, Francesca Rizzo, Michele Ciccarelli, Gennaro Galasso, Ylenia D’Agostino, Annamaria Salvati, Carmine Del Giudice, Paola Tesorio, dan Maria Rosaria Rusciano. “Precision and Personalized Medicine: How Genomic Approach Improves the Management of Cardiovascular and Neurodegenerative Disease.” Genes 11, no. 7 (Juli 2020): 747. https://doi.org/10.3390/genes11070747.
Susanti, Shinta, Handar Subhandi Bakhtiar, dan Handoyo Prasetyo. “Protection of Genetic Data in Health Services Based on Genomics Technology in Indonesia.” Asian Journal of Healthy and Science 2, no. 11 (21 November 2023): 860–70. https://doi.org/10.58631/ajhs.v2i11.85.
Takashima, Kyoko, Yuichi Maru, Seiichi Mori, Hiroyuki Mano, Tetsuo Noda, dan Kaori Muto. “Ethical concerns on sharing genomic data including patients’ family members.” BMC Medical Ethics 19, no. 1 (18 Juni 2018): 61. https://doi.org/10.1186/s12910-018-0310-5.
“Viewing the GDPR through a De-Identification Lens: A Tool for Compliance, Clarification, and Consistency.” Social Science Research Network, 3 November 2017. https://doi.org/10.2139/SSRN.2909121.
Willard, Huntington F. “Chapter 1 - The Human Genome: A Window on Human Genetics, Biology, and Medicine.” Dalam Genomic and Personalized Medicine (Second Edition), disunting oleh Geoffrey S. Ginsburg dan Huntington F. Willard, 4–27. Academic Press, 2013. https://doi.org/10.1016/B978-0-12-382227-7.00001-X.
Zainuddin, Muhammad, dan Aisyah Dinda Karina. “PENGGUNAAN METODE YURIDIS NORMATIF DALAM MEMBUKTIKAN KEBENARAN PADA PENELITIAN HUKUM” 2, no. 2 (2023).
Zhang, Jingcheng, Yingxuan Ren, Man Ho Au, Ka-Ho Chow, Yekai Zhou, Lei Chen, Yanmin Zhao, Junhao Su, dan Ruibang Luo. “Towards a New Standard in Genomic Data Privacy: A Realization of Owner-Governance.” bioRxiv, 24 Juli 2024. https://doi.org/10.1101/2024.07.23.604393.
Zmorka, Magda. “Genetic Information – Global Privacy Considerations – an Australian and UK Perspective.” Privacy Matters, 20 September 2022. https://privacymatters.dlapiper.com/2022/09/genetic-information-global-privacy-considerations-an-australian-and-uk-perspective/
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