📚Background

Genomics has revolutionized the healthcare industry by enabling personalized medicine through a deeper understanding of human health and disease risk. Despite these advances, the potential of genetic data remains largely untapped due to structural issues in data management and sharing.

The primary challenge is the centralized control of genetic data. Most genetic information is stored by healthcare providers, biotech companies, or research institutions, limiting an individual's control over their own data. This centralization raises concerns about privacy, data misuse, and a lack of transparency about how the data is used. In addition, genetic data is scattered across different platforms and institutions, hindering effective sharing and collaboration. This prevents researchers from accessing the diverse datasets needed for personalized medicine, drug development and disease prevention. While genetic tests can identify health risks, they often fail to provide actionable insights for users. Many reports do not offer personalized advice on lifestyle changes or preventive measures, limiting their practical value.

The gap between personal genetic data and the research community remains wide. Despite the value of this data, the process of sharing it with researchers is cumbersome, preventing many people from contributing to groundbreaking research.

To fully harness the power of genomics, we need to move towards a decentralized system that enables individuals to securely control and share their genetic data, while facilitating collaboration between users, researchers and biotech companies.