The Dark Side of Data: Power, Privacy, and the Pursuit of Precision

Episode Description

In this episode of scientifica sessions, we take an unfiltered look at the complex relationship between innovation, privacy, and power in healthcare data with Ardy Arianpour, CEO and Co-Founder of SEQSTER.

The life sciences industry is overflowing with data—EHRs, genomic profiles, claims data, wearables, and AI-driven predictions—but more data doesn’t always mean better decisions. Together with host Tabari Baker, Ardy explores what happens when the pursuit of precision meets the realities of fragmentation, bias, and inequity.

They unpack the hidden challenges behind the data revolution: the illusion of completeness in large datasets, the ethical tension between personalization and surveillance, and the growing misalignment between global privacy frameworks and real-world innovation. From AI model bias to the regulatory maze that stifles collaboration, this conversation challenges industry leaders to rethink how data is collected, governed, and used responsibly across research and patient engagement.

Whether you’re leading Medical Affairs, building digital health infrastructure, or shaping data strategy in biotech or pharma, this episode offers a grounded perspective on how to move toward a transparent, patient-centric data economy—one that values trust as much as technology.

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What We Covered

Data Abundance, Insight Scarcity

• Why more data doesn’t always yield better understanding

• How fragmented datasets create false completeness

• The strain on R&D, Medical Affairs, RWE, and HEOR teams

The Ethics of Data Ownership

• Who really owns patient data: the patient, provider, or payer?

• Why consent frameworks fail in real-time and longitudinal data use

• The fine line between personalization and surveillance

Data Quality and Bias in AI Models

• How bias propagates through clinical AI systems

• The challenge of verifying data integrity across multiple sources

• Why Medical Affairs must serve as the ethical interpreter of AI insights

The Regulatory Maze

• Global misalignment between FDA, EMA, and HIPAA-like frameworks

• How privacy laws (GDPR, CCPA, 21 CFR Part 11) impede collaboration

• Emerging models for responsible cross-border data exchange

Toward a Responsible Data Future

• What a transparent, patient-centric data economy could look like

• How collaborations are setting new ethical standards

• The growing role of Medical Affairs in bridging innovation and integrity

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Guest Bio

Ardy Arianpour is the CEO and Co-Founder of SEQSTER, the pioneering health-tech company putting patients at the center of their health data. A visionary executive with more than 20 years of experience in life sciences, pharma, and digital health, Ardy has dedicated his career to breaking barriers in how health data is accessed, shared, and used to improve outcomes.

Before founding SEQSTER in 2016, he helped launch multiple groundbreaking genetic tests as Chief Commercial Officer at Pathway Genomics and Senior Vice President at Ambry Genetics, which sold to Konica in 2017 for $1 billion. A key contributor to the landmark 2013 Supreme Court decision ending gene patenting, Ardy helped expand national access to BRCA testing.

He has been recognized as a PharmaVoice 100 Inspiring Leader (2023 & 2024), a Top 40 Healthcare Transformer, and one of Insights Success’ Top 10 Pioneers Redefining Healthcare. Ardy serves as Faculty at NextMed.Health, Judge for the Top Tech Awards, and an Advisor to UCSD’s Digital Health Board, Inside Precision Medicine, and the Fleet Science Center.

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Connect with Ardy

📧 [e-mail]
🌐 seqster.com
🔗 LinkedIn: Ardy Arianpour

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If You Liked This Episode…

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At scientifica sessions, we love our music!  Here's are the original tracks used:

1. 00:08:32 - Where Are We Going?

2. 00:15:15 - Bring the Hustle

3. 00:20:45 - Crystalize

4. 00:29:45 - Soyuz Space Guitar

5. 00:39:10 - Lore

 

Episode recorded on October 22, 2025.  All information shared is current as of the recording date.