Ethical and Legal Frontiers in Personalized Genomics: Balancing Innovation, Privacy, and Regulatory Compliance

The rapid advancement of personalized genomic technologies has unlocked substantial potential within healthcare, particularly in enhancing risk prediction accuracy, enabling patient-specific therapeutic regimens, and facilitating meticulous disease surveillance. Nevertheless, the collection and utilization of genetic information engender significant ethical and legal challenges. This study examines the intersection of genomics, data protection, and regulatory frameworks, emphasizing adherence to pertinent legal mandates such as the General Data Protection Regulation (GDPR) and Swiss data protection statutes. Key challenges include safeguarding sensitive genetic data, preventing genetic discrimination, and upholding intellectual property rights amidst the integration of artificial intelligence in predictive analytics. Furthermore, the psychological and social ramifications of disclosing genetic risk information are critically assessed, underscoring the imperative of transparency, informed consent, and ethical data management by genomic service providers. Through a comprehensive analysis of these multifaceted issues, this paper elucidates the contemporary nexus among genomics, law, and healthcare ethics, and proposes strategic approaches to advance responsible innovation while safeguarding patient rights and privacy.

Publication Details

Journal
Figshare
Published
2025-01-01
DOI
https://doi.org/10.6084/m9.figshare.29828042.v2
Primary Topic
Genomics and Rare Diseases
Type
article
Field-Weighted Citation Impact
0.00
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article

Ethical and Legal Frontiers in Personalized Genomics: Balancing Innovation, Privacy, and Regulatory Compliance

Figshare
Genomics and Rare Diseases
article

Ethical and Legal Frontiers in Personalized Genomics: Balancing Innovation, Privacy, and Regulatory Compliance

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Abstract

The rapid advancement of personalized genomic technologies has unlocked substantial potential within healthcare, particularly in enhancing risk prediction accuracy, enabling patient-specific therapeutic regimens, and facilitating meticulous disease surveillance. Nevertheless, the collection and utilization of genetic information engender significant ethical and legal challenges. This study examines the intersection of genomics, data protection, and regulatory frameworks, emphasizing adherence to pertinent legal mandates such as the General Data Protection Regulation (GDPR) and Swiss data protection statutes. Key challenges include safeguarding sensitive genetic data, preventing genetic discrimination, and upholding intellectual property rights amidst the integration of artificial intelligence in predictive analytics. Furthermore, the psychological and social ramifications of disclosing genetic risk information are critically assessed, underscoring the imperative of transparency, informed consent, and ethical data management by genomic service providers. Through a comprehensive analysis of these multifaceted issues, this paper elucidates the contemporary nexus among genomics, law, and healthcare ethics, and proposes strategic approaches to advance responsible innovation while safeguarding patient rights and privacy.

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Ethical and Legal Frontiers in Personalized Genomics: Balancing Innovation, Privacy, and Regulatory Compliance · Figshare (2025) | TGRS Research Map | TGRS