Ep. 121: Protecting Genetic Data Privacy - Barry Weber (CISO & DPO of Global Genes)

Summary

Barry Weber, the Chief Information Security Officer and Data Protection Officer at Global Genes brings decades of expertise in data compliance and cybersecurity. 

The discussion centers on the importance of data privacy, the challenges of protecting sensitive health information, and the complexity of compliance with various privacy laws like GDPR, HIPAA, CCPA/CPRA, and state-specific regulations. Barry shares his experiences working across multiple industries, including his role in healthcare research focused on rare diseases. The conversation also explores the future of genetic data, the potential of blockchain technology in healthcare, and the evolving landscape of cybersecurity threats and AI's impact. Barry emphasizes the need for data minimization, careful management of identifiable information, and the importance of educating individuals about data protection.

His leadership has been pivotal in implementing a comprehensive privacy and data security program that both aligns with IRB oversight and multinational privacy laws. Their team's approach, rooted in GDPR with extensions for US privacy laws, has been crucial in addressing the unique challenges faced by non-profits focused on rare diseases. Their governance model successfully integrates the nuanced requirements of legislation like WA MHMD and Nevada SB 370, setting a new standard in data protection and privacy.

Timestamps

00:00 Introduction and Welcome

01:02 Meet Barry Weber: Data Privacy Expert 

03:05 The Importance of Data Privacy

04:36 Privacy Frameworks and Compliance

07:57 Genetic Information and Privacy Laws

15:29 Global Genes and Rare Disease Research

21:46 Challenges in Data Protection and Sharing

33:49 The Role of AI and Blockchain in Cybersecurity

38:32 Personal Data Privacy Tips and Final Thoughts

Guest Links

• LinkedIn
• Global Genes

Mentioned resources

• GINA Act
• BeginNGS Program
• Cybersecurity with Sentinel One

Health Unchained Links

• Supercast – Sign up to access premium content
• Website
• Telegram
• LinkedIn
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