In the age of lightning-speed technological advancement, the healthcare landscape is experiencing a transformative shift (in many cases, slowly) toward personalized medicine. The spear’s tip of this evolution is the utilization of biometric data – the unique physical and behavioral characteristics of individuals – to custom healthcare interventions and better meet the needs of patients. In other words, we need to embrace the idea of patient-owned medical records.
As biometrics become increasingly prevalent in healthcare settings, there’s a battle brewing concerning the ownership and control over this sensitive medical information. But there’s one undeniable truth that can’t be argued: a person’s biodata is their health information to own. Tech giants have made billions of dollars by farming and selling user data. If data brokerages begin to gain access to people’s biodata, they’ll lose agency, sovereignty, and privacy concerning their own body’s medical data.
Consequences of Not Owning Your Biometric Medical Records
The potential scenarios are far-reaching, but let’s use one example of the consequences of not owning your biodata. You share your health information to a wellness app. The wellness app company then sells this sensitive info to a third-party data brokerage. Unbeknownst to you, the brokerage gives unauthorized access of your data to an insurance company that you’re seeking to purchase a plan from. While some laws protect against coverage denial due to pre-existing conditions, this particular biodata doesn’t fall under this consideration. The biodata simply shows that your blood pressure was a little high for a few months. Your plan now costs more, while everyone else made money on your biodata. Yikes.
You may think there’s a state law, federal law, or patient privacy rule that would protect against the above scenario, but the truth is, technology moves faster than legislative bureaucracy. And, even if laws do catch up, there will certainly be a biodata-harvesting industry filled with lobbyist ready to buy the right lawmakers to create the right (terribly wrong) laws.
On the other hand, let’s say you actually own your biodata, or this self-created medical record you’ve collected over the years. You begin to feel a bit under the weather and want to see a doctor. Since you own your biodata, you can share your health information with medical providers (or an AI healthcare agent), or both. You are now an active participant in creating your healthcare plan.
Instead of an insurance company denying you coverage, because you don’t own your patient data, you’re able to personalize your care plan because you’re the rightful owner of your personal health information. Having ownership rights of your own biometric data is not just an ethical imperative; it’s a crucial step toward promoting autonomy and in realizing the full potential of a more personalized healthcare system.
Biodata Ownership in an Antiquated Healthcare System
Biometric data, ranging from fingerprints and iris scans to DNA sequences and heart rate variability, hold immense value in healthcare. These biodata records can provide insights into an individual’s genetic predispositions, physiological responses, and overall health status. By analyzing biometric data points, healthcare professionals can develop personalized treatment plans, predict disease risks, and monitor patients’ progress more effectively. However, the collection, storage, and utilization of biometric information still raise significant concerns regarding privacy, consent, and security.
Historically, healthcare systems have often operated under a model where institutions and healthcare providers retain ownership of patient data, including biometrics. Patient-owned medical records hasn’t even been an option. While this approach may have been convenient in the past, it fails to acknowledge the evolving dynamics of patient-provider relationships in the digital age. Also, these electronic health records are still moved around in antiquated and outdated systems, which can lead to fragmented care. Think slow and hard-to-navigate patient portals.
The Four Key Components of Creating a System of Patient-Owned Medical Records
Patients are increasingly becoming active participants in their healthcare journey, seeking greater control over their medical information and treatment decisions. In this context, the concept of patient ownership of biometrics emerges as a fundamental principle that aligns with patient-centered care and respects individuals’ rights to autonomy and privacy. This is achieved through the four following ways:
- Informed Consent: Patients should have the right to provide explicit, informed consent before their biometric data are collected, stored, or shared. This consent process should include clear explanations of how the data will be used, who will have access to it, and the potential risks and benefits involved.
- Access and Control: Patients should have the ability to access their biometric data and have control over who can access it. This includes the right to review, update, and delete their information as needed, as well as the option to revoke consent for its use.
- Transparency and Accountability: Healthcare providers and institutions must be transparent about their data practices and accountable for safeguarding patients’ biometric information. This entails implementing robust security measures, complying with relevant privacy regulations, and regularly auditing data handling processes to ensure compliance and mitigate risks.
- Empowerment Through Education: Patients should be empowered with the knowledge and resources to understand the implications of sharing their biometric data. This includes educating them about the potential uses of biometrics in healthcare, the importance of privacy protection, and their rights regarding data ownership and control.
Empowering patients with control over their biometric data, or patient-owned medical records, can lead to more accurate diagnoses, better treatment outcomes, and ultimately, an improved healthcare system. The DeSci movement is poised to deliver this vision of patient ownership of biometrics, but it requires the collective efforts from stakeholders, technology developers, researchers, care providers, and the patients themselves. Data infrastructure and governance frameworks that prioritize patient privacy and autonomy are key, so technology developers must design systems and tools that prioritize data security, user consent, and interoperability.
Us, as a society, must also advocate for our own rights by actively engaging in discussions about data privacy and ownership. By voicing our concerns, asking questions, and demanding transparency, we can drive positive change toward a different healthcare system that truly values and respects autonomy and privacy. Overall, patient ownership of biometrics represents a pivotal shift towards patient-centered healthcare and individual-centered data sovereignty.
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