ELSI in Review • July 2022

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 2022 set explores regulations for direct-to-consumer genetic testing, the global diffusion of non-invasive prenatal testing, opinions about prenatal screening for deafness, 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!

Population Screening

• Williams, M. S. (2022). Population screening in health systems. Annual Review of Genomics and Human Genetics. Advance online publication.
• Richardson, E., McEwen, A., Newton-John, T., Crook, A., & Jacobs, C. (2022). Incorporating patient perspectives in the development of a core outcome set for reproductive genetic carrier screening: A sequential systematic review. European Journal of Human Genetics. Advance online publication.
• Downie, L., Halliday, J., Lewis, S., & Amor, D. J. (2021). Principles of genomic newborn screening programs: A systematic review. JAMA Network Open, 4(7), 1-12.

Prenatal Screening

• Freeman, L., Righetti, S., Delatycki, M. B., Scully, J. L., & Kirk, E. P. (2022). The views of people with a lived experience of deafness and the general public regarding genetic testing for deafness in the reproductive setting: A systematic review. Genetics in Medicine. Advance online publication.
• Ravitsky, V., Roy, M. C., Haidar, H., Henneman, L., Marshall, J., Newson, A. J., Ngan, O., & Nov-Klaiman, T. (2021). The emergence and global spread of noninvasive prenatal testing. Annual Review of Genomics and Human Genetics, 22(1), 309–338.
• Yeşilçinar, İ., Seven, M., Paşalak, Ş. İ., & Güvenç, G. (2021). Interventions aiming to improve informed decision on prenatal screening and testing: A scoping review of the literature. Journal of Genetic Counseling, 30(6), 1512– 1521.
• Bedei, I., Wolter, A., Weber, A., Signore, F., & Axt-Fliedner, R. (2021). Chances and challenges of new genetic screening technologies (NIPT) in prenatal medicine from a clinical perspective: A narrative review. Genes, 12(4), 501.

Responses to ELSI Concerns

• Cernat, A., Bashir, N. S., & Ungar, W. J. (2022). Considerations for developing regulations for direct-to-consumer genetic testing: A scoping review using the 3-I framework. Journal of Community Genetics,13(1), 155–170.
• Marchant, G. E. (2021). Global governance of human genome editing: What are the rules? Annual Review of Genomics and Human Genetics, 22(1), 385–405.
• Griffiths, K. E., Blain, J., Vajdic, C. M., & Jorm, L. (2021). Indigenous and tribal peoples data governance in health research: A systematic review. International Journal of Environmental Research and Public Health, 18(19), 10318.
• IItis, A. S., Lewis, A., Neely, S., Seaton, S. W., & Jeong, S. H. (2021). Applying genetic and genomic tools to psychiatric disorders: A scoping review. HEC Forum. Advance online publication.