The rapid advancement of genomic sequencing (GS) is revolutionizing personalized medicine, offering unprecedented insights into individual health, disease risk, and drug response. However, this scientific marvel comes with a profound ethical dilemma: how to safeguard the unique and highly sensitive nature of the resulting patient data. Genomic information is immutable, lifelong, and shared across families, making traditional data privacy frameworks inadequate.

The Unique Sensitivity of Genomic Data

Genomic data, unlike other medical records, possesses unique characteristics that elevate the privacy risk:

• Irreversible Identifiability: A person’s DNA sequence is essentially a permanent, biological identifier—it’s impossible to truly “anonymize” a full genome sequence, as researchers have demonstrated the ability to re-identify individuals by cross-referencing genomic data with public records. Once compromised, it cannot be changed like a password or a social security number.
• Implications for Relatives: The genetic information of an individual provides insight into the health and disease risks