نوع مقاله : مقاله پژوهشی
نویسندگان
1 دانشیار، گروه حقوق خصوصی و اسلامی، دانشکده حقوق و علوم سیاسی، دانشگاه تهران، تهران، ایران
2 وکیل پایۀ یک دادگستری از کانون وکلای دادگستری مرکز، تهران، ایران؛ دانش‌آموختۀ کارشناسی ارشد حقوق، دانشگاه علوم قضایی و خدمات اداری، تهران، ایران
چکیده
آگاهی در نظام پزشکی حقّی بنیادین برای بیمار است که هم در اخلاق و هم در حقوق جایگاهی تثبیت‌شده دارد. پزشک نیز به دلیل مسئولیت حرفه‌ای و احتمال طرح دعوای مدنی موظف است اطلاعات پزشکی را به‌طور کامل در اختیار بیمار قرار دهد. بااین‌حال، این الزام گاه با مصالح روانی و شخصی بیمار در تعارض قرار می‌گیرد، به‌ویژه زمانی که اطلاع از وضعیت سلامتی به‌جای توانمندسازی، موجب اضطراب یا اختلال در تصمیم‌گیری می‌شود. در این زمینه پرسش مهمی مطرح می‌شود: آیا باید همواره بر حقّ بیمار برای دانستن تأکید کرد یا آنکه ندانستن، در مواردی، می‌تواند انتخابی آگاهانه و اخلاقی باشد؟ در پاسخ، مفهوم «حق ندانستن» پدید آمده که به فرد اجازه می‌دهد از دریافت اطلاعات حساس مانند داده‌های ژنتیکی یا تشخیص‌های روانی خودداری کند، بی‌آنکه این امتناع به‌معنای غفلت تلقی شود. این حق بر اصول خودمختاری و خودتعیینی استوار بوده و دربرابر پیامدهای ناخواسته افشای اطلاعات، ازجمله اضطراب، انگ اجتماعی و فشار تصمیم‌گیری نقش محافظتی دارد. این پژوهش با رویکردی میان‌رشته‌ای ابعاد حقوقی، پزشکی و فلسفی این حق را بررسی می‌کند و نشان می‌دهد که در اسناد بین‌المللی تنها به‌عنوان ترجیح شناخته شده است در ایران نیز به‌دلیل فقدان چارچوب قانونی روشن، توسعه‌نیافته باقی مانده است.
کلیدواژه‌ها
موضوعات
عنوان مقاله [English]
In the Meadow of Unawareness: On the Right Not to Know
نویسندگان [English]
- Abbas Mirshekari 1
- Jamshid Zargari 2
1 Associate Professor of Private Law Department, University of Tehran, Tehran, Iran.
2 Attorney at Law in Iran Central Bar Association, Tehran, Iran; Master of Laws, University of Judicial Sciences and Administrative Services, Tehran, Iran.
چکیده [English]
This research aims to provide a comprehensive, interdisciplinary, and structured analysis of the emerging concept of the "right not to know" at the intersection of law, medicine, and philosophy. Unlike previous studies that have often addressed the legal, medical, or philosophical aspects in a fragmented or one-dimensional manner, this study adopts an integrative approach to delineate the interactions and overlaps between these dimensions. The primary question is whether the "right not to know" has achieved an established position in international human rights frameworks and in Iran's national legal system. This objective is rooted in Iranian literary and cultural traditions that praise knowledge as a light liberating from ignorance, yet subtly acknowledge the "right not to know" in cases causing distress. The study also examines the conflict between awareness and the preservation of privacy, mental health, and human dignity in the context of advancements in medical technologies like genomics and artificial intelligence. The ultimate goal is to outline a precise, multifaceted perspective on the foundations, legal status, proponents' and opponents' views, and Iran's position to lay the groundwork for future policy-making.
The study employs descriptive-analytical methods to explain concepts and theoretical frameworks, and historical methods to examine the evolution of legal developments related to the "right not to know". Research sources include books, scholarly articles, international legal documents (such as the Universal Declaration on the Human Genome and Human Rights 1997, the Oviedo Convention 1997, and the Council of Europe Recommendation 1992), opinions of prominent philosophers, and analysis of Iran's national laws and regulations (such as the Law on Publication and Free Access to Information 2009, the National Data and Information Management Law 2022, the Civil Registration Law, and the Patient Rights Charter). These sources have been examined using qualitative methods, including content analysis, comparative studies, and critical analysis. The article is structured around four main axes: 1) Foundations of the right not to know (focusing on autonomy and self-determination), 2) Status of recognizing the right not to know in international documents, 3) Views of proponents and opponents across four axes (emerging social needs, natural rights theory, protection of collective interests, and implementation challenges), and 4) Status in Iran's legal system. This interdisciplinary methodology allows for the integration of legal, philosophical, psychological, and medical perspectives to deliver a deep and layered analysis.
The findings reveal that the foundations of the "right not to know" are rooted in the principles of autonomy (as the right to freely decide about one's life) and self-determination (as individual sovereignty over fate), which are embodied in human rights documents. At the international level, this concept is recognized in documents like the Universal Declaration on the Human Genome (Article 5, Paragraph 3) and the Oviedo Convention (Article 10, Paragraph 2) as a respected individual preference, but not as a binding legal right, and it is weakened by exceptions such as public health protection. Proponents' views emphasize emerging social needs (protecting mental health from genetic information), justification based on natural rights (complementary to the right to know), utilitarianism (enhancing collective well-being), and feasibility of implementation, while opponents see it as a threat to informed consent, collective interests (e.g., preventing contagious diseases), and challenging in execution (due to the hereditary nature of information). In Iran's legal system, this right is not explicitly or implicitly recognized, with the governing principle being the "right to know"; laws like the Law on Publication and Free Access to Information emphasize transparency, but provisions like Article 16 (refraining from disclosure in cases harming health) may implicitly support it, though focusing more on privacy than autonomy. The Patient Rights Charter (Clause 1-2-2) refers to respecting patient refusal, but lacks legal force and is ambiguous with terms like "serious risk".
The innovation of this research lies in its integrative interdisciplinary approach, which for the first time examines the interaction between Iranian literary-cultural aspects, philosophical (autonomy and self-determination), legal (international and national documents), and medical (genetic advancements) dimensions in the concept of the "right not to know". Its added value is the critical analysis of Iran's status, demonstrating how Iranian cultural traditions (distinguishing beneficial knowledge from distressing ignorance) could serve as a basis for establishing this right, yet the current legal system lacks it. By highlighting implementation challenges and theoretical debates, the study suggests to policymakers the need for explicit laws to balance individual freedom and public interests. Its practical value is in recommendations such as developing empathetic information protocols, allowing choice of timing for receiving information, providing comprehensive psychological support, and combating discrimination, which can improve patients' quality of life and strengthen trust in the healthcare system. This research enriches Iran's legal literature and provides a foundation for future bioethics studies.
Ultimately, the "right not to know" as an emerging concept at the crossroads of law and medicine is an effort to uphold human rights principles amid the influx of medical information, particularly in the era of genetic and diagnostic technologies. This concept, emphasizing an individual's informed refusal of medical information, serves not only as a shield against psychological and social harms but also as a reflection of respect for human dignity and individual value diversity. The examination of its theoretical foundations reveals its roots in the core principles of autonomy and self-determination, which hold established positions in international human rights documents and contemporary legal systems. However, the right not to know remains, in international legal arenas—such as the Universal Declaration on the Human Genome and the Oviedo Convention—more as an individual preference than an explicit legal right, lacking the necessary firmness for institutionalization due to inconsistencies and numerous exceptions. At the theoretical level, debates between proponents and opponents revolve around axes such as emerging social needs, justifiability under natural rights theory, utilitarian considerations, and implementation challenges. Proponents view it as a tool for mental health protection and discrimination prevention, while opponents consider it a potential threat to informed consent and collective interests. In Iran's legal system, the concept is not explicitly or implicitly recognized, with the dominant principle in the medical system being the patient's "right to know", obligating physicians to provide complete and necessary information. Although certain clauses in the Patient Rights Charter indirectly support choices for not knowing medical information, the lack of binding legal support and ambiguity in implementation criteria render reliance on this right impractical. To recognize the right not to know as a legal right, there is a need for clear and precise legal text that defines its boundaries centered on patient autonomy and will, rather than a paternalistic physician's perspective, as physician decision-making without considering patient wishes conflicts with self-determination and can undermine trust in the treatment system. Until such recognition, strategies like developing empathetic information guidelines emphasizing communication skills such as active listening, simple language, and gradual information delivery; allowing patients to choose appropriate timing for receiving information; providing comprehensive support including psychological counseling, support groups, and reliable informational resources; and combating discrimination and social stigma through anti-discrimination laws and awareness campaigns can promote a patient-centered approach that respects autonomy, facilitates informed participation in health decisions, and leads to improved mental health and quality of life for patients.
کلیدواژه‌ها [English]
- Autonomy
- Genetic Information
- Iranian Legal System
- Medical Law
- Right Not to Know
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