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Beyond Individual Consent: The Ethical Necessity of Recognizing Co-Ownership in Genetic Research
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L Afshar    , S Pakizehkar , S Hosseinzadeh , A Zadehvakili , M Hedayati |
| Cellular and Molecular Endocrine Research Center, Research Institute for Endocrine Molecular Biology, Research Institute for Endocrine Sciences, Shahid Beheshti University of Medical Sciences, Tehran, Iran, , hedayati47@gmail.com |
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Abstract: (57 Views) |
Informed consent is a central pillar of ethical research; however, its current implementation, particularly its reliance on individual, written consent, faces profound challenges in the context of genetic studies. Unlike other types of personal health data, genomic information is inherently relational and can reveal insights not only into the health of the participant but also their biological relatives. This shared nature ethically challenges the assumption of exclusive ownership of genetic data by an individual. When a participant consents to genomic DNA analysis, they are in effect disclosing information about their parents, siblings, and children—individuals who have not been informed or granted permission for such disclosure. Although practical constraints prevent obtaining consent from all genetically related individuals, the ethical imperative, at a minimum, requires redefining the consent process to account for this relational dimension. This article critically examines the limitations of individualistic models of informed consent in genetic research and argues in favor of frameworks that recognize family interests, promote relational autonomy, and, where possible, provide mechanisms for shared decision-making. Practical reforms are also suggested, such as revising consent forms, educating participants about family implications, and employing dynamic or stratified consent models that respect individual agencies while also preserving the privacy of genetically related individuals.
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| Keywords: Informed consent, Genetic research, Shared genetic data, Family privacy, Relational autonomy, Bioethics, Written consent, Genomic ethics |
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Full-Text [PDF 726 kb]
(11 Downloads)
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Type of Study: Review |
Subject:
General
Received: 2025/12/29 | Accepted: 2026/04/21 | Published: 2026/04/30
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