Digital twin technology is one of the most promising tools in healthcare innovation. These virtual replicas of patients are transforming diagnosis, personalizing treatments, and accelerating research. But digital twins also raise important ethical questions, such as who owns digital twin healthcare data, and how should consent and privacy be managed?
This article explores digital twin ethical issues, the gaps in current regulation, and how healthcare can balance innovation with patient rights.
The Rise of Digital Twins in Healthcare
A digital twin of a patient is a computer-generated copy of a body (or part) that can track disease progression and predict responses to treatment. Doctors can simulate surgeries on digital twins, researchers can test therapies, and patients can benefit from hyper-personalized medicine. The opportunities to improve patient care are enormous.
But digital twin technology comes with a critical question: who owns digital twin data in healthcare? Building a digital twin requires a lot of sensitive and personal health information. And as more hospitals and biotech companies use these systems, determining digital twin ethics is becoming more urgent.
The promise of digital twins in healthcare is clear: better outcomes, fewer risks, and more efficient healthcare. But the risks around consent, ownership, and privacy still need to be addressed in order to ensure trust and fairness.
The Core Ethical Dilemmas
There are three main predicaments when it comes to the ethics of digital twins: who controls a digital twin model, how exactly can a digital twin be used, and how do you ensure patient privacy?
Patient Data Ownership and Control
At the heart of digital twin ethics is patient data ownership. Digital twins are built from very detailed health data – everything from imaging scans and genetic data to real-time wearable device feeds. But once this data is aggregated, refined, and modeled into a digital twin, who controls it?
There are three plausible answers:
The patient, because they are the original data subject.
The healthcare provider, because it manages the treatment context.
The tech company that developed the algorithms and platforms.
Until digital twin data ownership is clarified, patients risk losing control over their most sensitive personal information. In the worst-case scenario, the commercialization of digital twins could lead to companies profiting from models of peoples’ bodies without them knowing about it.
Consent in the Use of Sensitive Health Data
Digital twin consent is another pressing issue. Traditional healthcare consent forms are often broad, granting access for “treatment and research.” But a digital twin could potentially also be used to train algorithms, test pharmaceutical products, or share data with insurers.
Ethically, patients should have a say in how their digital twin is used with ongoing (instead of one-time) consent models. Because digital twins are “living” replicas that continuously update with new health data, dynamic consent frameworks would allow patients to continuously manage permissions as their digital twins change.
Healthcare Privacy and Cybersecurity Risks
Digital twins also represent a new boundary for healthcare privacy. Unlike individual medical records, digital twins combine many datasets into a detailed, real-time model of a person’s biology. That makes them an attractive target for cyberattacks.
The potential harms are serious: identity theft, genetic discrimination, or even misuse of predictive health information by employers and insurers. Protecting digital twins will require stronger safeguards and legal requirements than those currently applied to electronic health records.
Legal Frameworks and Regulatory Grey Areas
Healthcare overall already has strong privacy regulations. The EU’s GDPR and the US HIPAA laws both govern the collection, use, and storage of personal health data. GDPR emphasizes the right to data access and erasure, while HIPAA protects identifiable patient information.
But these frameworks were designed before the ethical challenges of digital twins in medicine were a concern. They address static datasets, not dynamic models that evolve as more data flows in.
Because current laws have gaps in regulation covering digital twin technology, questions like these need to be answered:
Can a patient demand the deletion of their digital twin?
If a digital twin is co-created with AI algorithms, does the developer have partial ownership?
Are predictions made by a digital twin, such as risk of cancer in ten years, covered as protected health information?
Clarifying this legal uncertainty before digital twins are widely used in healthcare is extremely important for patients, healthcare providers and developers.
Expert Perspectives on Ethics in Digital Twins
As digital twins become more of a reality, experts are ringing alarms about the potential ethical pitfalls in this groundbreaking technology:
Medical ethicists warn that without clear frameworks, digital twins could undermine trust in medicine.
Bioethics scholars argue that digital twin consent must be specific and ongoing to respect patient autonomy.
Legal experts point out that without addressing patient data ownership, organizations using digital twins face legal risks from errors, bias, data misuse, and ambiguity over who owns what.
The throughline in all of these experts’ concerns is clear: The medical benefits of digital twins can’t come at the cost of patient privacy.
The Road Ahead
The future of digital twins in healthcare is likely to include the development of global standards for data governance. International bodies like the ones currently managing genomic data sharing could also set rules for:
Ownership: Affirming patients are the primary owners of their digital twin data.
Consent: Requiring dynamic, informed, and revocable consent mechanisms.
Security: Mandating state-of-the-art cybersecurity protections for digital twin databases.
Transparency: Requiring companies and providers to disclose commercial uses of digital twins.
Balancing innovation with the protection of patient rights will be key to the future of digital twin technology in healthcare. If handled responsibly, digital twins could power medical breakthroughs while also respecting the fundamental values of patient dignity, autonomy, and trust. If mishandled, they risk becoming another example of exploitation in digital health.
The key ethical dilemma of who owns digital twin data in healthcare has no answer yet. But if the global healthcare community can address the ethical challenges of digital twins in medicine head-on, innovation and patient rights will be able to operate hand in hand.
Want to learn more about the role of digital twins in medicine? Read this next: Healthcare Digital Twins: How Virtual Patient Models Are Transforming Care
