INTERNATIONAL CONGRESS OF
PharmacoGenetics
Integrating Pharmacogenomics with Patient Medication Experience: Ethical Considerations
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Faezeh Arghidash,1,*
1. Department of Medical Biotechnology and Nanotechnology, Faculty of Medicine, Mashhad University of Medical Sciences, Mashhad, Iran
- Introduction: Personalization in medicine stands at the intersection of genetic insight, patient lived experiences with medications, and ethical/policy considerations. By integrating pharmacogenomics (PGx) with an individual’s medication history, clinicians can tailor therapy in a way that aligns with both biological predispositions and real-world usage patterns (1, 2). Yet, this promise hinges on navigating privacy, autonomy, informed consent, and fiduciary responsibilities within patient-clinician relationships. As PGx data becomes more integrated into care, concerns about data protection, potential stigmatization, and the scope of disclosure emerge as central ethical challenges that must be addressed through transparent communication, patient education, and robust governance (3, 4). Pharmacists, with their accessibility and expertise in medication, are well-positioned to translate PGx results into practical decisions, support shared decision-making, and ensure that personalization remains anchored in respect for persons and patient autonomy, while balancing risks and benefits (3). To maximize the ethical, person-centered use of PGx testing in patient care, PGx-based discussions of treatment should incorporate the patient's lived medication experience and ethical principles.
- Methods: Relevant studies were searched in PubMed, Google Scholar, and ScienceDirect databases from 2010 to 2023, and the resulting studies were reviewed.
- Results: Personalization in pharmacotherapy arises from the integration of PGx, real-world patient medication experiences, and the ethical/policy contexts surrounding them. This comprehensive approach leads to more precisely tailored treatment decisions; however, its success hinges on managing privacy, autonomy, informed consent, and fiduciary obligations. The combination of PGx data and patients’ medication histories significantly improves the prediction of drug responses and potential side effects. When clinicians incorporate these elements, they can adjust dosages, opt for alternative treatments, or implement monitoring strategies that better reflect the patient's lived experiences. Incorporating PGx data raises intricate privacy concerns, particularly related to family disclosure and potential stigmatization. Study participants expressed a preference for transparent governance and voluntary sharing controls, ensuring that data access is confined to relevant care contexts. Autonomy remained a central theme tied to ongoing informed consent. Participants highlighted the necessity of understanding testing goals, possible outcomes (including incidental findings), and the implications for confidentiality and cost. They viewed the consent process as an iterative dialogue rather than a one-time agreement. Clinicians, including pharmacists, have fiduciary responsibilities to align expert recommendations with patient preferences. Data-supported discussions promote shared decision-making, minimizing decisional misalignment and enhancing patient satisfaction with care plans. Access to PGx results has sometimes revealed information beyond medication management (e.g., disease risk), wherein participants' preferences highlighted the need for tailored counseling regarding what information would be disclosed and how it would be utilized. Pharmacists play a crucial role in facilitating PGx integration, converting test results into practical, patient-centered actions. Their close relationship with patients enhances education, interpretation, and collaborative decision-making with prescribers.
- Conclusion: Personalized medicine, driven by PGx, should be conceived as a collaborative, patient-centered process that integrates genetic insights with each individual’s medication experiences within a robust ethical and governance framework. When PGx data are thoughtfully incorporated into care, they can refine treatment decisions, improve safety, and enhance patient outcomes. However, realizing this potential requires careful attention to privacy, autonomy, informed consent, and fiduciary duty, ensuring that patients retain control over their information and participate meaningfully in decisions about their care. Pharmacists, with their accessibility and expertise in medications, are well-positioned to translate PGx results into actionable, patient-focused strategies and to support shared decision-making alongside prescribers. Ongoing dialogue, transparent governance, and tailored counseling are essential to balance benefits and risks, manage expectations regarding incidental findings, and respect individual preferences about the scope of information disclosed. Ultimately, the goal is to harmonize genomic knowledge with real-world medication use in a manner that honors patient autonomy, fosters trust, and supports ethically sound, clinically effective personalization of therapy.
- Keywords: Pharmacogenomics, Biomedical ethics, Privacy and confidentiality, Personalization of medicine.
