ELSI in Review • June 2023

About this listing

ELSI in Review is a listing of recently published reviews of the literature on key ELSI topics curated by CERA staff. Our June 2023 set explores transparency in secondary use of health data, attitudes regarding race-targeted genetic testing, and more. If you would like your ELSI-relevant review featured in this communication, please contact us at [email protected]. You can find more reviews in the ELSIhub Publications database!

Public Perspectives

• Iltis, A. S., Rolf, L., Yaeger, L., Goodman, M. S., & DuBois, J. M. (2023). Attitudes and beliefs regarding race-targeted genetic testing of Black people: A systematic review. Journal of Genetic Counseling, 32(2), 435–461.
• Cumyn, A., Ménard, J.-F., Barton, A., Dault, R., Lévesque, F., & Ethier, J.-F. (2023). Patients’ and members of the public’s wishes regarding transparency in the context of secondary use of health data: Scoping review. Journal of Medical Internet Research, 25(1), Article e45002.
• Aiyegbusi, O. L., Macpherson, K., Elston, L., Myles, S., Washington, J., Sungum, N., Briggs, M., Newsome, P. N., & Calvert, M. J. (2020). Patient and public perspectives on cell and gene therapies: A systematic review. Nature Communications, 11(1), Article 6265.
• Clayton, E. W., Halverson, C. M., Sathe, N. A., & Malin, B. A. (2018). A systematic literature review of individuals’ perspectives on privacy and genetic information in the United States. PLOS ONE, 13(10), Article e0204417.
• Delhove, J., Osenk, I., Prichard, I., & Donnelley, M. (2020). Public acceptability of gene therapy and gene editing for human use: A systematic review. Human Gene Therapy, 31(1–2), 20–46.
• LePoire, E., Basu, B., Walker, L., & Bowen, D. J. (2019). What do people think about genetics? A systematic review. Journal of Community Genetics, 10(2), 171–187.
• Canedo, J. R., Miller, S. T., Myers, H. F., & Sanderson, M. (2019). Racial and ethnic differences in knowledge and attitudes about genetic testing in the US: Systematic review. Journal of Genetic Counseling, 28(3), 587–601.
• Fisher, E. R., Pratt, R., Esch, R., Kocher, M., Wilson, K., Lee, W., & Zierhut, H. A. (2020). The role of race and ethnicity in views toward and participation in genetic studies and precision medicine research in the United States: A systematic review of qualitative and quantitative studies. Molecular Genetics & Genomic Medicine, 8(2), Article e1099.

Clinicians’ Knowledge, Attitudes, and Experiences

• Li, C., Su, X., Sun, Q., & Huang, Y. (2023). Knowledge and attitudes of medical and pharmacy students about pharmacogenomics: A systematic review and meta-analysis. The Pharmacogenomics Journal, 1–7.
• Shickh, S., Mighton, C., Clausen, M., Adi-Wauran, E., Hirjikaka, D., Kodida, R., Krishnapillai, S., Reble, E., Sam, J., Shaw, A., Lerner-Ellis, J., Baxter, N. N., Laupacis, A., & Bombard, Y. (2022). “Doctors shouldn’t have to cheat the system”: Clinicians’ real-world experiences of the utility of genomic sequencing. Genetics in Medicine, 24(9), 1888–1898.
• Reich, J., Cantrell, M. A., & Smeltzer, S. C. (2023). An integrative review: The evolution of provider knowledge, attitudes, perceptions and perceived barriers to caring for patients with sickle cell disease 1970–now. Journal of Pediatric Hematology/Oncology Nursing, 40(1), 43–64.
• Ong, C. S. B., Fok, R. W.-Y., Tan, R. C. A., Fung, S. M., Sun, S., & Ngeow, J. Y. Y. (2022). General practitioners’ (GPs) experience, attitudes and needs on clinical genetic services: A systematic review. Family Medicine and Community Health, 10(4), Article e001515.
• Mikat-Stevens, N. A., Larson, I. A., & Tarini, B. A. (2015). Primary-care providers’ perceived barriers to integration of genetics services: A systematic review of the literature. Genetics in Medicine, 17(3), 169–176.
• Hamilton, J. G., Abdiwahab, E., Edwards, H. M., Fang, M.-L., Jdayani, A., & Breslau, E. S. (2017). Primary care providers’ cancer genetic testing-related knowledge, attitudes, and communication behaviors: A systematic review and research agenda. Journal of General Internal Medicine, 32(3), 315–324.

AI in Healthcare

• Albahri, A. S., Duhaim, A. M., Fadhel, M. A., Alnoor, A., Baqer, N. S., Alzubaidi, L., Albahri, O. S., Alamoodi, A. H., Bai, J., Salhi, A., Santamaría, J., Ouyang, C., Gupta, A., Gu, Y., & Deveci, M. (2023). A systematic review of trustworthy and explainable artificial intelligence in healthcare: Assessment of quality, bias risk, and data fusion. Information Fusion, 96, 156–191.
• Li, F., Ruijs, N., & Lu, Y. (2023). Ethics & AI: A systematic review on ethical concerns and related strategies for designing with AI in healthcare. AI, 4(1), 28–53.
• Xu, L., Sanders, L., Li, K., & Chow, J. C. L. (2021). Chatbot for health care and oncology applications using artificial intelligence and machine learning: Systematic review. JMIR Cancer, 7(4), Article e27850.
• Yin, J., Ngiam, K. Y., & Teo, H. H. (2021). Role of artificial intelligence applications in real-life clinical practice: Systematic review. Journal of Medical Internet Research, 23(4), Article e25759.

Value Assessment and Pricing of Therapeutics

• ten Ham, R. M. T., Klungel, O. H., Leufkens, H. G. M., & Frederix, G. W. J. (2020). A review of methodological considerations for economic evaluations of gene therapies and their application in literature. Value in Health, 23(9), 1268–1280.
• Hoxhaj, I., Govaerts, L., Simoens, S., Van Dyck, W., Huys, I., Gutiérrez-Ibarluzea, I., & Boccia, S. (2020). A systematic review of the value assessment frameworks used within health technology assessment of omics technologies and their actual adoption from HTA agencies. International Journal of Environmental Research and Public Health, 17(21), Article 8001.
• Paulden, M., Stafinski, T., Menon, D., & McCabe, C. (2015). Value-based reimbursement decisions for orphan drugs: A scoping review and decision framework. PharmacoEconomics, 33(3), 255–269.