ELSI in Review • July 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 July 2023 set explores digital interventions for genomics and genetics education, regulatory issues in gene therapy, 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!

Pre-implantation and Prenatal Screening

• Cheng, L., Meiser, B., Kirk, E., Kennedy, D., Barlow-Stewart, K., & Kaur, R. (2022). Decisional needs of patients considering preimplantation genetic testing: A systematic review. Reproductive BioMedicine Online, 44(5), 839–852.
• Shorey, S., Lalor, J., Pereira, T. L.-B., Jarašiūnaitė-Fedosejeva, G., & Downe, S. (2023). Decision-making and future pregnancies after a positive fetal anomaly screen: A scoping review. Journal of Clinical Nursing. Advance online publication.
• Wilmot, H. C., de Graaf, G., van Casteren, P., Buckley, F., & Skotko, B. G. (2023). Down syndrome screening and diagnosis practices in Europe, United States, Australia, and New Zealand from 1990–2021. European Journal of Human Genetics, 31, 497–503.

Genetics Education

• Gasteiger, N., Vercell, A., Khan, N., Dowding, D., Davies, A. C., & Davies, A. (2023). Digital interventions for genomics and genetics education, empowerment, and service engagement: A systematic review. Journal of Community Genetics, 14(3), 227–240.
• Zureigat, B., Gould, D., & Seven, M. (2022). Educational interventions to improve nurses’ competency in genetics and genomics: A scoping review. The Journal of Continuing Education in Nursing, 53(1), 13–20.

Regulatory and Legal Issues

• Casaletto, J., Bernier, A., McDougall, R., & Cline, M. S. (2023). Federated analysis for privacy-preserving data sharing: A technical and legal primer. Annual Review of Genomics and Human Genetics, 24.
• Javitt, G. H., & Vollebregt, E. R. (2022). Regulation of molecular diagnostics. Annual Review of Genomics and Human Genetics, 23, 653–673.
• Oliva, A., Grassi, S., Vetrugno, G., Rossi, R., Della Morte, G., Pinchi, V., & Caputo, M. (2022). Management of medico-legal risks in digital health era: A scoping review. Frontiers in Medicine, 8.
• Pola, S., & Padi, D. (2023). “Gene therapy”: Ethical and regulatory issues. In S. Das, S. Thomas, & P. P. Das (Eds.), Novel Platforms for Drug Delivery Applications (pp. 607–618). Woodhead Publishing.
• Wasti, S., Lee, I. H., Kim, S., Lee, J.-H., & Kim, H. (2023). Ethical and legal challenges in nanomedical innovations: A scoping review. Frontiers in Genetics, 14.

Genetic Testing for Cancer

• Briggs, L. G., Steele, G. L., Qian, Z. J., Subbana, S., Alkhatib, K. Y., Labban, M., Langbein, B. J., Nguyen, D.-D., Cellini, J., Kilbridge, K., Kibel, A. S., Trinh, Q.-D., Rana, H. Q., & Cole, A. P. (2023). Racial differences in germline genetic testing for prostate cancer: A systematic review. JCO Oncology Practice, 19(5), e784–e793.
• Lima, E., Esplen, M. J., Martins, F., Alves, M., & Sales, C. M. D. (2023). Communication about hereditary cancer risk to offspring: A systematic review of children’s perspective. Psycho-Oncology, 32(6), 875–887.