Jayden Lee, EMBA, PharmD, BCACP and Husna Rahim, PharmD
Ethical Challenges in Pharmacogenomics Research. What are some key ethical issues in healthcare today? As the integration of genomic data into healthcare decisions becomes more widespread, it is vital to examine the ethical implications of this rapidly advancing field. Three key areas of focus include informed consent, patient’s genetic privacy, and health disparities.
Balance between open science and genetic privacy. Informed consent is a fundamental ethical principle in research that must be upheld in pharmacogenomics (PGx). In this context, informed consent is particularly important due to the sensitive nature of genetic information and the potential implications it may have for individuals and their families. Informed consent guidelines developed by experts can help investigators navigate complex ethical considerations while continuing to advance this promising field.
A balance also needs to be established between open science and genetic privacy. With the increasing availability of genetic information, there is a risk of unauthorized access or misuse of this sensitive data (Horn, 2024). Researchers must ensure robust data security measures are in place to protect the participant’s genetic information. Additionally, clear guidelines regarding data sharing and secondary use of biospecimens are necessary to maintain trust and respect for participants’ privacy (Mai et al., 2024).
Preventing health disparities. The importance of addressing health disparities in PGx research cannot be overstated. Genetic information can be used to discriminate against individuals in areas such as employment and insurance. While the implementation of the Genetic Information Nondiscrimination Act (GINA) in the United States provides safeguards against genetic discrimination, it is essential to recognize that not all nations have enacted similar protective legislation. Researchers have a responsibility to examine the ramifications of their work, ensuring that their studies do not perpetuate existing disparities nor create new ones (Martin 2017).
Conduct research responsibly. The advancement of genomic medicine through clinically-actionable insights holds great promise for patients and healthcare professionals. However, it is crucial to prioritize ethics to ensure that research is conducted responsibly, and the findings are effectively translated to diverse populations.
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