Interdisciplinary Studies in the Humanities

The fetus’s right to the privacy of genetic data

Document Type : Original Research Paper

Authors

Mahnoush Karami 1
Hossein Zarvandi 2

1 PhD Candidate in Women’s Studies, Faculty of Women and Family, University of Religions and Denominations, Qom, Iran

2 Assistant Professor, Faculty of Law, University of Religions and Denominations, Qom, Iran

https://doi.org/10.22035/isih.2026.5640.5224
Abstract
Recent advancements in genetic sciences, particularly the development of non-invasive prenatal testing (NIPT) technologies, have enabled the precise extraction and analysis of fetal genetic data. These data, due to their unique, lifelong stability, hereditary nature, and ability to predict health conditions and susceptibility to certain diseases, are considered among the most sensitive forms of personal data. Unauthorized processing or disclosure of such data may have profound consequences on identity, social, ethical, and legal levels. Despite the growing body of literature on genetic data privacy, a systematic examination of the jurisprudential and legal aspects of protecting fetal genetic data privacy, particularly under Iranian law, remains significantly underdeveloped. This study, which is interdisciplinary in nature and lies at the intersection of genetics, Islamic jurisprudence, and law, aims to elucidate the jurisprudential and legal foundations of protecting fetal genetic data privacy and to conduct a comparative analysis of Iranian legal frameworks with international documents and standards in this domain. The research, employing a qualitative, descriptive-analytical, and comparative approach, draws data from a review of jurisprudential texts, national laws, and international regulations, including the General Data Protection Regulation (GDPR) of the European Union and UNESCO declarations. The data are analyzed using qualitative content analysis methods. The findings indicate that fundamental principles of Islamic jurisprudence, such as the prohibition of espionage, the principle of no harm (la darar), the principle of human dignity, and the principle of trust (amanat), provide substantial theoretical support for safeguarding the privacy of fetal genetic data. International instruments, including the GDPR and the Oviedo Convention, offer clear frameworks for informed consent, data processing restrictions, data security, and the prohibition of genetic discrimination. The study suggests that by integrating Islamic jurisprudential principles with international standards, a comprehensive and contextually adapted model for protecting fetal genetic data privacy within the Iranian legal system can be established. In this regard, there is an increasing need for the formulation of independent and explicit regulations, particularly in determining the legal representative of the fetus, the principle of data minimization, technical-organizational security requirements, data governance, and restrictions on data transfer.

Keywords

privacy
genetic data
fetus
Islamic jurisprudence
Iranian law
Subjects
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  • Receive Date 28 September 2025
  • Revise Date 30 December 2025
  • Accept Date 15 February 2026

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