ELSI in Review • May 2024

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 May 2024 set explores parental perspectives on early life screening for autism spectrum disorder, attitudes towards sharing health data, the ELSI of preimplantation 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!

Biobanking and Data Sharing

• Cascini, F., Pantovic, A., Al-Ajlouni, Y. A., Puleo, V., Maio, L. D., & Ricciardi, W. (2024). Health data sharing attitudes towards primary and secondary use of data: A systematic review. eClinicalMedicine, 71, Article 102551.
• Sguazzi, G., Fasani, G., Renò, F., & Gino, S. (2024). Biobanks: Archives or resources? Their secondary use for forensic purposes—A systematic review. Forensic Sciences, 4(1), 42–61.
• Rivera-Alcántara, J. A., Esparza-Hurtado, N., Galán-Ramírez, G. A., Cruz-Bautista, I., Mehta, R., Aguilar-Salinas, C. A., & Martagon, A. J. (2024). A systematic review of biobanks in Latin America: Strengths and limitations for biomedical research. The International Journal of Biological Markers. Advance online publication.
• Staunton, C., Shabani, M., Mascalzoni, D., Mežinska, S., & Slokenberga, S. (2024). Ethical and social reflections on the proposed European Health Data Space. European Journal of Human Genetics. Advance online publication.

Clinical Genetics

• Andreoli, L., Peeters, H., Van Steen, K., & Dierickx, K. (2024). Taking the risk. A systematic review of ethical reasons and moral arguments in the clinical use of polygenic risk scores. American Journal of Medical Genetics Part A. Advance online publication.
• Azuelos, C., Marquis, M.-A., & Laberge, A.-M. (2024). A systematic review of the assessment of the clinical utility of genomic sequencing: Implications of the lack of standard definitions and measures of clinical utility. European Journal of Medical Genetics, 68, Article 104925.
• Dounavi, K., & Koldas, M. (2024). Parental perspectives on early life screening and genetic testing for ASD: A systematic review. Journal of Autism and Developmental Disorders. Advance online publication.
• Drettas, P., Tatanis, V., Spiliopoulou, C., Adonakis, G., & Liatsikos, E. (2023). The influence of expanded carrier screening in assisted reproductive techniques: Changed the ‘game’– review. Annals of Medicine and Surgery, 85(5), Article 1811.
• Foreman, J., Perrett, D., Mazaika, E., Hunt, S. E., Ware, J. S., & Firth, H. V. (2023). DECIPHER: Improving genetic diagnosis through dynamic integration of genomic and clinical data. Annual Review of Genomics and Human Genetics, 24, 151–176.
• van der Geest, M. A., Maeckelberghe, E. L. M., van Gijn, M. E., Lucassen, A. M., Swertz, M. A., van Langen, I. M., & Plantinga, M. (2024). Systematic reanalysis of genomic data by diagnostic laboratories: A scoping review of ethical, economic, legal and (psycho)social implications. European Journal of Human Genetics. Advance online publication.

Benefit Sharing

• Wang, Y., He, Y., Shi, Y., Qian, D. C., Gray, K. J., Winn, R., & Martin, A. R. (2024). Aspiring toward equitable benefits from genomic advances to individuals of ancestrally diverse backgrounds. The American Journal of Human Genetics. Advance online publication.
• Cartney, A. M. M., Scholz, A. H., Groussin, M., & Staunton, C. (2024). Benefit-sharing by design: A call to action for human genomics research. Annual Review of Genomics and Human Genetics. Advance online publication.
• Humphries, F., Lawson, C., Benzie, J. A. H., & Morrison, C. (2023). African aquaculture: Genetic resource and traditional knowledge access and benefit sharing measures. Reviews in Fisheries Science & Aquaculture, 31(2), 180–196.

Preimplantation Genetic Testing (PGT)

• Alon, I., Bussod, I., & Ravitsky, V. (2024). Mapping ethical, legal, and social implications (ELSI) of preimplantation genetic testing (PGT). Journal of Assisted Reproduction and Genetics. Advance online publication.
• El Tokhy, O., Salman, M., & El-Toukhy, T. (2024). Preimplantation genetic diagnosis. Obstetrics, Gynaecology & Reproductive Medicine, 34(3), 73–77.
• Thompson, W. S., Babayev, S. N., McGowan, M. L., Kattah, A. G., Wick, M. J., Bendel-Stenzel, E. M., Chebib, F. T., Harris, P. C., Dahl, N. K., Torres, V. E., & Hanna, C. (2024). State of the science and ethical considerations for preimplantation genetic testing for monogenic cystic kidney diseases and ciliopathies. Journal of the American Society of Nephrology, 35(2), 235–248.
• Ginod, P., & Dahan, M. H. (2024). Preimplantation genetic testing for polygenetic conditions: A legal, ethical, and scientific challenge. Seminars in Reproductive Medicine. Advance online publication.