Ethics and Governance in Personalized Medicine
Summary
Personalized medicine promises to tailor prevention, diagnosis and treatment to the genetic, environmental and lifestyle characteristics of each individual. This shift from one‐size‐fits‐all approaches raises profound ethical questions around equity, privacy, informed consent and the distribution of benefits. As genomic sequencing and digital health records become routine, robust governance frameworks are needed to secure data integrity, protect against misuse and ensure that innovations serve all populations rather than a privileged few. Key ethical imperatives include transparent policies for data sharing, clear procedures for obtaining consent in complex research contexts, and mechanisms to redress structural injustices that have historically excluded certain groups from both research and clinical care.
Governance in personalised medicine operates at multiple levels—from institutional review boards to international consortia—and must balance patient autonomy with public interest. Regulatory bodies are beginning to adopt adaptive models that can respond swiftly to emerging technologies such as artificial intelligence in diagnostics or gene editing tools. Patient and public engagement is increasingly recognised as essential for legitimising research agendas, refining priority‐setting and maintaining social licence. Ultimately, ethical governance must foster trust, promote solidarity in bearing costs and risks, and provide clear accountability for both researchers and clinicians.
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Ethics and Governance in Personalized Medicine publication trend
The graph below shows the total number of articles in ethics and governance in personalized medicine across all publications each year (not limited to Nature Index journals).
Technical terms
Personalized Medicine: Medicine tailored to an individual’s genetic, environmental and lifestyle factors.
Structural Injustice: Systemic barriers that prevent equitable access to healthcare benefits and research participation.
Diagnostic Layering: The sequential delivery of molecular and clinical test results that reshape patient understanding of their condition.
Data Actionability: The degree to which genomic or clinical data can inform decision-making in research or clinical practice.
Informed Consent: A process ensuring individuals understand and agree to data use and medical interventions.
References
- Actionable data for precision oncology: Framing trustworthy evidence for exploratory research and clinical diagnostics. Social Science & Medicine (2021).
- Precision medicine and the problem of structural injustice. Medicine, Health Care and Philosophy (2023).
- Diagnostic layering: Patient accounts of breast cancer classification in the molecular era. Social Science & Medicine (2021).
- Personalized medicine, digital technology and trust: a Kantian account. Medicine, Health Care and Philosophy (2020).
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