Why Health Data Is Secure With Joined Bio: Beyond the 23andMe Lesson

When 23andMe recently filed for bankruptcy and California's Attorney General recommended customers delete their data, it highlighted a fundamental problem: health information is often treated as a company asset rather than personal property.

This development has sparked valid concerns about health data privacy across the ecosystem. For everyone involved in healthcare research—participants, researchers, investors, and healthcare providers—data security and ethical handling must be paramount. Here's why Joined Bio's approach fundamentally differs from consumer genetic testing companies, and why health data remains truly secure with our platform.

Patient Control: Not Just a Feature, But Our Foundation

Unlike companies that collect data for their own purposes without explicit knowledge of each use, Joined Bio operates on a fundamentally different model:

Participants maintain complete ownership and control of their health information at all times.

What this looks like in practice:

• Granular permission settings: The Joined Bio platform allows participants to set preferences for which research areas interest them (e.g., data studies, biospecimen studies, clinical trials).

• Specific consent for data use and study participation: When researchers need patients, specimens, or data for their studies, participants receive detailed notifications about the study, its purpose, and what information would be shared. They then have the ability to choose to participate or not.

• Revocation rights: If participants change their minds, they can withdraw consent at any time, and the system immediately removes access to their data for future research.

• Fair compensation: When patients contribute to research, they receive appropriate compensation – because their contribution has real value.

This patient-controlled model means health data isn't an asset Joined Bio "owns" – it's information participants choose to share through a secure infrastructure for specific purposes they explicitly approve.

A Business Model That Intentionally Protects Privacy

Companies facing financial difficulties often look to monetize their data assets, creating inherent risk for individuals whose information they hold. Joined Bio's business model eliminates this conflict by aligning incentives with privacy:

• Revenue generation through facilitating connections between researchers and willing participants.

• Success depends entirely on maintaining participant trust – without it, the platform cannot function.

• Aligned incentives to use data in ways authorized – the business grows when more people trust the system enough to participate.

Technical Protections: Multiple Layers of Security

Beyond the patient-first philosophy, Joined Bio has implemented specific technical safeguards that meet or exceed industry standards:

• Advanced data segmentation: Personal identifiers are stored separately from health information using a secure linking protocol that requires authentication factors to reconnect.

• AES-256 encryption: All data is protected using military-grade encryption both in transit and at rest – the same standard used by financial institutions.

• De-identified data sharing only:  No personally-identifying information is ever released to researchers.  All direct identifiers are removed from datasets and individuals are re-identified only to contact them for participation in research studies.

• HIPAA compliance: The platform adheres to U.S. privacy regulations, ensuring high standards of protection.

Creating Value Through Trust: Benefits to the Research Ecosystem

The architecture of Joined Bio's platform creates natural advantages for both patients and researchers that extend beyond basic data security.

For patients, control translates to confidence. When participants can see exactly which studies their information supports and maintain the ability to withdraw at any time, their willingness to engage increases significantly. Most participants genuinely want to advance medical research—they simply need assurance that their contribution will be used responsibly. This transparency leads to higher engagement rates and more meaningful participation, creating a positive feedback loop that benefits the entire research ecosystem.

For researchers, this participant-centered approach solves several persistent challenges. Research teams gain access to higher-quality data with complete consent documentation that meets increasingly strict regulatory requirements. More importantly, they connect with participants who genuinely understand the research purpose and are invested in its success. The platform's capabilities also allow researchers to request additional information when needed, creating opportunities for longitudinal studies that would be impossible in traditional models.

This thoughtful approach to data governance creates a foundation of trust that benefits everyone involved in the research process. When participants feel respected and informed, they become partners in research rather than simply sources of specimens.

Transparency by Design

The 23andMe situation demonstrates why transparency cannot be an afterthought. Joined Bio believes all stakeholders deserve to know exactly how information is being used and protected. That's why:

• Policies are written in plain language with examples that illustrate exactly how data flows through the system.

• Participants receive notifications before their data is used for research.

• The revenue model is clearly explained – both participants and the company benefit when successfully connecting researchers with willing participants, not from unexpected data uses.

The Future of Health Data Is Patient-Controlled

When traditional biobanks and genetic testing companies struggle financially, patient data often becomes vulnerable. Joined Bio is pioneering a fundamentally different model where:

• Individuals maintain ownership of their health information

• Consent is specific, informed, and revocable

• Financial incentives align with privacy protection

• Technical safeguards provide multiple layers of security

When participants share their health journey through the Joined Bio platform, they're not just advancing medicine—they're participating in a new paradigm that respects privacy, values contributions, and maintains individual control.

Creating a Better Research Ecosystem Together

For researchers looking to access compliantly-sourced biospecimens, investors interested in sustainable healthcare innovation, or patients concerned about data security, Joined Bio offers a platform built on aligned incentives and patient control.

In a post-23andMe world, health data security requires more than just good intentions—it demands business models and technical infrastructure designed from the ground up for privacy, control, and trust. This is the Joined Bio difference.

Contact us to learn more about how Joined Bio protects data while advancing medical research.