ELSI in Review • March 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 March 2023 set explores the ethics of gene therapy, genetics literacy, digital tools for genetic service delivery, public attitudes toward GM foods, 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!

Polygenic Scores

• Kullo, I. J., Lewis, C. M., Inouye, M., Martin, A. R., Ripatti, S., & Chatterjee, N. (2022). Polygenic scores in biomedical research. Nature Reviews Genetics, 23, 524–532.
• Wang, Y., Tsuo, K., Kanai, M., Neale, B. M., & Martin, A. R. (2022). Challenges and opportunities for developing more generalizable polygenic risk scores. Annual Review of Biomedical Data Science, 5, 293–320.
• Patel, A. P., & Khera, A. V. (2023). Advances and applications of polygenic scores for coronary artery disease. Annual Review of Medicine, 74, 141–154.

Genomic Data

• Knoppers, B. M., Bernier, A., Bowers, S., & Kirby, E. (2023). Open data in the era of the GDPR: Lessons from the Human Cell Atlas. Annual Review of Genomics and Human Genetics. Advance online publication.
• Gürsoy, G. (2022). Genome privacy and trust. Annual Review of Biomedical Data Science, 5, 163–181.
• Bentzen, H. B. (2022). Exchange of human data across international boundaries. Annual Review of Biomedical Data Science, 5, 233–250.

Gene Therapy

• Baas, L., van der Graaf, R., van Hoorn, E. S., Bredenoord, A. L., & Meijer, K. (2023). The ethics of gene therapy for hemophilia: A narrative review. Journal of Thrombosis and Haemostasis, 21(3), 423–420.
• Bateman-House, A., Shah, L. D., Escandon, R., McFadyen, A., & Hunt, C. (2023). Somatic gene therapy research in pediatric populations: Ethical issues and guidance for operationalizing early phase trials. Pharmaceutical Medicine, 37, 17–24.

Precision Medicine

• Ju, D., Hui, D., Hammond, D. A., Wonkam, A., & Tishkoff, S. A. (2022). Importance of including non-European populations in large human genetic studies to enhance precision medicine. Annual Review of Biomedical Data Science, 5, 321–339.
• Lohse, S. (2022). Mapping uncertainty in precision medicine: A systematic scoping review. Journal of Evaluation in Clinical Practice. Advance online publication.
• Aguilera-Cobos, L., García-Sanz, P., Rosario-Lozano, M. P., Claros-Díaz, G., & Blasco-Amaro, J. A. (2023). An innovative framework to determine the implementation level of personalized medicine: A systematic review. Frontiers in Public Health, 11, Article e1039688.
• Groff, E., Orzechowski, M., Schuetz, C., & Steger, F. (2023). Ethical aspects of personalized research and management of systemic inflammatory response syndrome (SIRS) in children. International Journal of Environmental Research and Public Health, 20(1), Article 470.

Artificial Intelligence

• Ghioni, R., Taddeo, M., & Floridi, L. (2023). Open source intelligence and AI: A systematic review of the GELSI literature. AI & Society. Advance online publication.
• Kumar, P., Chauhan, S., & Awasthi, L. K. (2023). Artificial intelligence in healthcare: Review, ethics, trust challenges & future research directions. Engineering Applications of Artificial Intelligence, 120, Article e105894.
• Atkins, D., Makridis, C. A., Alterovitz, G., Ramoni, R., & Clancy, C. (2022). Developing and implementing predictive models in a learning healthcare system: Traditional and artificial intelligence approaches in the Veterans Health Administration. Annual Review of Biomedical Data Science, 5, 393–413.

GM Foods

• Smykov, I. T. (2023). Neophobia: Socio-ethical problems of innovative technologies of the food industry. Food systems, 5(4), 308–318.
• Jin, S., Li, W., Naab, F. Z., Coles, D., & Frewer, L. J. (2023). Consumer attitudes toward novel agrifood technologies: A critical review on genetic modification and synthetic biology. In M. E. Knowles, L. E. Anelich, A. R. Boobis, & B. Popping (Eds.), Present knowledge in food safety: A risk-based approach through the food chain, (pp. 1004–1014). Academic Press.
• Strobbe, S., Wesana, J., Van Der Straeten, D., & De Steur, H. (2023). Public acceptance and stakeholder views of gene edited foods: A global overview. Trends in Biotechnology. Advance online publication.

Public and Patient Communication

• Harden, K. P. (2023). Genetic determinism, essentialism and reductionism: Semantic clarity for contested science. Nature Reviews Genetics, 24, 197–204.
• Park, S. Y., Kim, Y., Kim, S., & Katapodi, M. C. (2022). Informational needs of individuals from BRCA-harboring families: A systematic review and content analysis. Genetics in Medicine, 25(4), Article e100001.
• Lee, W., Shickh, S., Assamad, D., Luca, S., Clausen, M., Somerville, C., Tafler, A., Shaw, A., Hayeems, R., Bombard, Y., & Genetics Navigator Study Team. (2023). Patient-facing digital tools for delivering genetic services: A systematic review. Journal of Medical Genetics, 60, 1–10.

Genetics Education

• Patterson, W. G., & Ward, L. D. (2023). Genetics and genomics education for physician assistant students: A review of the literature. The Journal of Physician Assistant Education, 34(1), 62–68.
• Maghfiroh, H., Zubaidah, S., Mahanal, S., & Susanto, H. (2023). A systematic review of genetic literacy interventions in secondary schools. AIP Conference Proceedings, 2569(1), Article e020030.