ELSI in Review • December 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 December 2023 set explores public perceptions of AI in health care, ancestry bias in pharmacogenomics, 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!

Data Policy

• Smit, J.-A. R., Mostert, M., van der Graaf, R., Grobbee, D. E., & van Delden, J. J. M. (2023). Specific measures for data-intensive health research without consent: A systematic review of soft law instruments and academic literature. European Journal of Human Genetics, 1–10.
• Austin, L. M. (2023). COVID-19 and the data governance gap. Annual Review of Law and Social Science, 19(1), 235–253.
• Brauneck, A., Schmalhorst, L., Majdabadi, M. M. K., Bakhtiari, M., Völker, U., Baumbach, J., Baumbach, L., & Buchholtz, G. (2023). Federated machine learning, privacy-enhancing technologies, and data protection laws in medical research: Scoping review. Journal of Medical Internet Research, 25(1), Article e41588.
• Raycheva, R., Kostadinov, K., Mitova, E., Bogoeva, N., Iskrov, G., Stefanov, G., & Stefanov, R. (2023). Challenges in mapping European rare disease databases, relevant for ML-based screening technologies in terms of organizational, FAIR and legal principles: Scoping review. Frontiers in Public Health, 11.
• Scheibner, J., Kroesche, N., Wakefield, L., Cockburn, T., McPhail, S. M., & Richards, B. (2023). Does legislation impede data sharing in Australia across institutions and jurisdictions? A scoping review. Journal of Medical Systems, 47(1), 116.

Patient Decision-Making

• Kohut, K., Morton, K., Turner, L., Shepherd, J., Fenerty, V., Woods, L., Grimmett, C., Eccles, D. M., & Foster, C. (2023). Patient decision support resources inform decisions about cancer susceptibility genetic testing and risk management: A systematic review of patient impact and experience. Frontiers in Health Services, 3.
• Bracewell-Milnes, T., Saso, S., Jones, B., Cato, S., Parikh, R., Thum, M.-Y., Johnson, M., Almeida, P., Norman-Taylor, J., & Nikolaou, D. (2021). A systematic review exploring the patient decision-making factors and attitudes towards pre-implantation genetic testing for aneuploidy and gender selection. Acta Obstetricia et Gynecologica Scandinavica, 100(1), 17–29.
• Chair, S. Y., Law, B. M. H., Zang, Y., Waye, M. M. Y., Cheng, H. Y., & Chow, K. M. (2023). The effects of decision aids for genetic counselling among people considering genetic testing: A systematic review. Journal of Clinical Nursing, 32(19–20), 6796–6810.

Artificial Intelligence

• Veale, M., Matus, K., & Gorwa, R. (2023). AI and global governance: Modalities, rationales, tensions. Annual Review of Law and Social Science, 19(1), 255–275.
• Attard-Frost, B., De los Ríos, A., & Walters, D. R. (2023). The ethics of AI business practices: A review of 47 AI ethics guidelines. AI and Ethics, 3(2), 389–406.
• Beets, B., Newman, T. P., Howell, E. L., Bao, L., & Yang, S. (2023). Surveying public perceptions of artificial intelligence in health care in the United States: Systematic review. Journal of Medical Internet Research, 25(1), Article e40337.
• Polevikov, S. (2023). Advancing AI in healthcare: A comprehensive review of best practices. Clinica Chimica Acta, 548, Article 117519.

Pharmacogenomics

• Corpas, M., Siddiqui, M. K., Soremekun, O., Mathur, R., Gill, D., & Fatumo, S. (2024). Addressing ancestry and sex bias in pharmacogenomics. Annual Review of Pharmacology and Toxicology. Advance online publication.
• Fahim, S. M., Alexander, C. S. W., Qian, J., Ngorsuraches, S., Hohmann, N. S., Lloyd, K. B., Reagan, A., Hart, L., McCormick, N., & Westrick, S. C. (2023). Current published evidence on barriers and proposed strategies for genetic testing implementation in health care settings: A scoping review. Journal of the American Pharmacists Association, 63(4), 998–1016.
• Omran, S., Leong, S. L., Blebil, A., Mohan, D., & Teoh, S. L. (2023). Effectiveness of pharmacogenomics educational interventions on healthcare professionals and health professions students: A systematic review. Research in Social and Administrative Pharmacy, 19(11), 1399–1411.
• Pirmohamed, M. (2023). Pharmacogenomics: Current status and future perspectives. Nature Reviews Genetics, 24(6), Article 6.