Exploring the Experiences and Ethical Concerns of Cancer Patients Undergoing Gene Therapy: A Phenomenological Study Approach
Main Article Content
Abstract
Gene therapy has emerged as a transformative treatment for various types of cancer, offering new possibilities for patients with limited therapeutic options. However, while its biological efficacy has been extensively studied, little is known about the subjective experiences of patients undergoing this innovative treatment. This gap in knowledge raises the question: How do cancer patients navigate the emotional complexities, including hope, uncertainty, and ethical dilemmas, associated with gene therapy?
In addressing this gap, our study employs a phenomenological approach, specifically Interpretative Phenomenological Analysis (IPA), to explore how patients interpret and experience their journey through gene therapy. Using semi-structured interviews with 15 cancer patients, we identified key themes related to hope, uncertainty, and ethical concerns that shape their treatment experiences. The findings contribute to the existing literature by revealing that while initial hope for a cure is prevalent, it evolves into a complex emotional landscape, influenced by ongoing uncertainties and ethical reflections. Moreover, ethical concerns about the novel nature of gene therapy surfaced as an integral aspect of the emotional experience, highlighting the unique psychological challenges faced by patients undergoing this treatment.
Our study provides valuable insights into the psychosocial dimensions of gene therapy and underscores the importance of addressing these aspects in clinical care. The findings suggest that healthcare providers should integrate emotional and ethical support into the treatment process to improve patient well-being and decision-making. Further research should expand on these findings to explore long-term impacts and include diverse patient populations for a broader understanding.
Article Details
Section
References
Ahmed, Z. (2020). Practicing precision medicine with intelligently integrative clinical and multi-omics data analysis. This article is relevant to the study's exploration of precision medicine and gene therapy, as it provides insight into the integration of clinical data for optimizing patient outcomes, which aligns with the uncertainty and hope expressed by participants in this study. Human Genomics, 14(1). Scopus. https://doi.org/10.1186/s40246-020-00287-z
Bunnik, E. M., Dondorp, W. J., Bredenoord, A. L., de Wert, G., & Cornel, M. C. (2021). Mainstreaming informed consent for genomic sequencing: A call for action. This study's discussion of informed consent is directly tied to the ethical concerns raised by patients in this research, as many participants in this study expressed difficulties in fully understanding the risks and benefits of gene therapy. European Journal of Cancer, 148, 405–410. Scopus. https://doi.org/10.1016/j.ejca.2021.02.029
Cannon, P., Asokan, A., Czechowicz, A., Hammond, P., Kohn, D. B., Lieber, A., Malik, P., Marks, P., Porteus, M., Verhoeyen, E., Weissman, D., Weissman, I., & Kiem, H.-P. (2021). Safe and Effective in Vivo Targeting and Gene Editing in Hematopoietic Stem Cells: Strategies for Accelerating Development. Human Gene Therapy, 32(1–2), 31–42. Scopus. https://doi.org/10.1089/hum.2020.263
Grassi, L., Alfonsi, R., Francescangeli, F., Signore, M., De Angelis, M. L., Addario, A., Costantini, M., Flex, E., Ciolfi, A., Pizzi, S., Bruselles, A., Pallocca, M., Simone, G., Haoui, M., Falchi, M., Milella, M., Sentinelli, S., Di Matteo, P., Stellacci, E., … Bonci, D. (2019). Organoids as a new model for improving regenerative medicine and cancer personalized therapy in renal diseases. Cell Death and Disease, 10(3). Scopus. https://doi.org/10.1038/s41419-019-1453-0
Hajj, A., Hachem, R., Khoury, R., Hallit, S., ElJEBBAWI, B., Nasr, F., El Karak, F., Chahine, G., Kattan, J., & Rabbaa Khabbaz, L. (2021). Clinical and genetic factors associated with anxiety and depression in breast cancer patients: A cross-sectional study. BMC Cancer, 21(1). Scopus. https://doi.org/10.1186/s12885-021-08615-9
Hajj, A., Hachem, R., Khoury, R., Nehme, T., Hallit, S., Nasr, F., Karak, F. E., Chahine, G., Kattan, J., & Khabbaz, L. R. (2021). Clinical and Genetic Factors Associated With the Breast Cancer-Related Sleep Disorders: The “CAGE-Sleep” Study–A Cross-Sectional Study. Journal of Pain and Symptom Management, 62(3), e46–e55. Scopus. https://doi.org/10.1016/j.jpainsymman.2021.02.022
James, J. E., & Joseph, G. (2022). “It’s personalized, but it’s still bucket based”: The promise of personalized medicine vs. The reality of genomic risk stratification in a breast cancer screening trial. New Genetics and Society, 41(3), 228–253. Scopus. https://doi.org/10.1080/14636778.2022.2115348
Lindgren, A., Anttila, M., Rautiainen, S., Arponen, O., Hämäläinen, K., Könönen, M., Vanninen, R., & Sallinen, H. (2019). Dynamic contrast-enhanced perfusion parameters in ovarian cancer: Good accuracy in identifying high HIF-1α expression. PLoS ONE, 14(8). Scopus. https://doi.org/10.1371/journal.pone.0221340
Liskova, A., Samec, M., Koklesova, L., Giordano, F. A., Kubatka, P., & Golubnitschaja, O. (2020). Liquid biopsy is instrumental for 3PM dimensional solutions in cancer management. Journal of Clinical Medicine, 9(9), 1–38. Scopus. https://doi.org/10.3390/jcm9092749
Matrana, M. R., & Campbell, B. (2020). Precision medicine and the institutional review board: Ethics and the genome. Ochsner Journal, 20(1), 98–103. Scopus. https://doi.org/10.31486/toj.19.0098
Mehta, A., Saifi, M., Batra, U., Suryavanshi, M., & Gupta, K. (2020). Incidence of ROS1-rearranged non-small-cell lung carcinoma in India and efficacy of crizotinib in lung adenocarcinoma patients. Lung Cancer: Targets and Therapy, 11, 19–25. Scopus. https://doi.org/10.2147/LCTT.S244366
Oberkampf, F., Gutierrez, M., Trabelsi Grati, O., Rhun, É. L., Trédan, O., Turbiez, I., Kadi, A., Dubot, C., Taillibert, S., Vacher, S., & Bonneau, C. (2023). Phase II study of intrathecal administration of trastuzumab in patients with HER2-positive breast cancer with leptomeningeal metastasis. Neuro-Oncology, 25(2), 365–374. Scopus. https://doi.org/10.1093/neuonc/noac180
Peng, J., Liang, X., & Calderon, L. (2019). Progress in research on gold nanoparticles in cancer management. Medicine (United States), 98(18). Scopus. https://doi.org/10.1097/MD.0000000000015311
Pratumkaew, P., Issaragrisil, S., & Luanpitpong, S. (2021). Induced pluripotent stem cells as a tool for modeling hematologic disorders and as a potential source for cell-based therapies. Cells, 10(11). Scopus. https://doi.org/10.3390/cells10113250
Protiere, C., Arnold, M., Fiorentino, M., Fressard, L., Lelièvre, J. D., Mimi, M., Raffi, F., Mora, M., Meyer, L., Sagaon-Teyssier, L., Zucman, D., Préau, M., Lambotte, O., Spire, B., Suzan-Monti, M., Bergmann, J. F., Blacher, J., Blanc, A. P., Delobel, P., … Yazdanpanh, Y. (2020). Differences in HIV cure clinical trial preferences of French people living with HIV and physicians in the ANRS-APSEC study: A discrete choice experiment. Journal of the International AIDS Society, 23(2). Scopus. https://doi.org/10.1002/jia2.25443