Citation :

Leonardo, Jeremiah, 2025. "Bioethics in the Genomic Era: Navigating Privacy, Consent, and Equity" International Journal of Community Empowerment & Society Administration [IJCESA]  Volume 2, Issue 4: 22-33.

Abstract :

From tailored medicine, predictive diagnostics and near ubiquitous population health management, the rapid advances in genomic technology have ushered in unprecedented opportunity to improve human health. But these scientific developments bring difficult ethical conflicts that challenge established notions of justice, consent and privacy. Whether we should add to sequence and analysis of genomic data has become irrelevant as use of genomic information increases in the clinic, research laboratory, and commercial markets. From this we now turn our attention to how we ought to ethically regulate their use. In this research, three key ethical values—privacy, informed consent and equity—are employed to assess the bioethical landscape of genomic era. First, genetic information is both identifying and permanent, it ties individuals to their families making the genomic privacy vulnerable. Anonymized sequences can often be easily de-anonymized by cross-referencing with external databases, putting the user at risk of being stigmatized, discriminated against, or attacked by third parties such as law enforcement agencies, employers and insurers. To effectively protect, technical (encryption, federated analysis), legal (data protection regulation, access controls) and ethical (transparency, responsible conduct of research/intervention and participant trust) protections are needed. Second, the open nature and data-rich landscape of modern genomic research pose challenges for traditional models of informed consent. New models of consent, such as broad, tiered and dynamic consent, which enable flexible ongoing decision-making seek to restore participant autonomy through more equitable structures. Ethical participation is also broader by community-led and collective consent, especially for marginalized and indigenous people for whom their genetic data have cultural basis. Third, pressing issues of equity and justice are raised by genetic research and medicine. The gap in diagnosis and treatment is perpetuated by the underrepresentation of non-Europeans in genetic databases. Likewise, inconsistency in access to precision treatments and genomic testing risks widening already present global health disparities. Hence, for ethical genomic governance to ensure equitable access to genetic healthcare, it should include inclusive recruitment procedures, fair benefit-sharing agreements and laws. In general, the article argues for a pluralistic governance structure in which practical tools like privacy-by-design, participant-centered approaches to consent, community oversight, and regulatory convergence are coupled with ethical standards such as beneficence, do no harm (or nonmaleficence), respect for persons, and justice. There is no reason that the revolutionary potential of genetics cannot be realized without sacrificing fairness, social justice and human dignity: we can have our genetic revolution – sensibly governed.

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Keywords :

Genomics; Bioethics; Genetic Privacy; Informed Consent; Data Governance; Equity; Social Justice; Precision Medicine; Biobanks; Community Engagement; Benefit Sharing; Genetic Data Protection; Dynamic Consent; Health Disparities; Genetic Research Ethics.