Human Rights and Ethical Considerations in the Genomic Era
منبع:
فلسفه حقوق سال ۴ بهار و تابستان ۱۴۰۴ شماره ۱ (پیاپی ۷)
182 - 161
حوزههای تخصصی:
The rapid advancement of genome editing technologies, particularly CRISPR-Cas9, has revolutionized biomedical science while raising unprecedented ethical and human rights concerns. This paper examines the implications of genetic engineering through a human rights lens, focusing on three critical challenges: threats to equality from potential genetic enhancement, consent paradoxes in germline editing, and emerging forms of genetic discrimination. Using an interdisciplinary methodology that integrates bioethics, political philosophy, and international law, supplemented by case studies like the He Jiankui affair and DIY biohacking movement, the study reveals how current governance frameworks remain inadequate against these challenges. Key findings demonstrate that unequal access to genetic technologies risks creating "genetic privilege" and new forms of biological stratification, while germline interventions pose unresolved intergenerational justice issues. Furthermore, existing protections like GINA fail to address contemporary genetic privacy risks in direct-to-consumer testing and data commercialization. The paper proposes a tripartite governance model combining international cooperation (through WHO/UNESCO frameworks and a global registry), adaptive national policies (including regulatory sandboxes), and strengthened institutional oversight (with mandatory ethics training). These recommendations aim to balance scientific innovation with ethical safeguards, preventing genetic technologies from becoming tools of inequality while harnessing their therapeutic potential. The conclusion emphasizes the need for ongoing monitoring of social impacts and development of culturally sensitive implementation strategies, as the genomic revolution continues to challenge fundamental notions of human dignity, equality, and self-determination in the 21st century.