ELSI in Review • August 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 August 2022 set explores ethical issues related to organoids, incidental findings in noninvasive prenatal screening, genotype-driven research approaches, 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!

Organoids

• Barnhart, A. J., & Dierickx, K. (2022). The many moral matters of organoid models: A systematic review of reasons. Medicine, Health Care, and Philosophy. Advance online publication.
• de Jongh, D., Massey, E. K., VANGUARD consortium, & Bunnik, E. M. (2022). Organoids: A systematic review of ethical issues. Stem Cell Research & Therapy, 13(1), 337.

Non-invasive Prenatal Testing

• Perrot, A., & Horn, R. (2022). The ethical landscape(s) of non-invasive prenatal testing in England, France and Germany: Findings from a comparative literature review. European Journal of Human Genetics, 30(1), 676–681.
• Lannoo, L., Lenaerts, L., Van Den Bogaert, K., Che, H., Brison, N., Devriendt, K., Amant, F., Vermeesch, J. R., & Van Calsteren, K. (2021). Non-invasive prenatal testing suggesting a maternal malignancy: What do we tell the prospective parents in Belgium? Prenatal Diagnosis, 41(10), 1264–1272.
• Dow, E., Freimund, A., Smith, K., Hicks, R. J., Jurcevic, P., Shackleton, M., James, P. A., Fellowes, A., Delatycki, M. B., Fawcett, S., Flowers, N., Pertile, M. D., McGillivray, G., & Mileshkin, L. (2021). Cancer diagnoses following abnormal noninvasive prenatal testing: A case series, literature review, and proposed management model. JCO Precision Oncology, 5(1), 1001–1012.

Heredity Cancer Risk

• Gould, D., Walker, R., Makari-Judson, G., & Seven, M. (2022). Experiences of individuals with a variant of uncertain significance on genetic testing for hereditary cancer risks: A mixed method systematic review. Journal of Community Genetics, 13(4), 371–379.
• Toss, A., Quarello, P., Mascarin, M., Banna, G. L., Zecca, M., Cinieri, S., Peccatori, F. A., & Ferrari, A. (2022). Cancer predisposition genes in adolescents and young adults (AYAs): A review paper from the Italian AYA Working Group. Current Oncology Report, 24(1), 843–860. 

Research Ethics

• Tschigg, K., Consoli, L., Biasiotto, R., & Mascalzoni, D. (2022). Ethical, legal and social/societal implications (ELSI) of recall-by-genotype (RbG) and genotype-driven-research (GDR) approaches: A scoping review. European Journal of Human Genetics. Advance online publication.
• Lapid, M. I., Meagher, K. M., Giunta, H. C., Clarke, B. L., Ouellette, Y., Armbrust, T. L., Sharp, R. R., & Wright, R. S. (2021). Ethical challenges in COVID-19 biospecimen research: Perspectives from institutional review board members and bioethicists. Mayo Clinic Proceedings, 96(1), 165–173.
• Vears, D. F., Minion, J. T., Roberts, S. J., Cummings, J., Machirori, M., Blell, M., Budin-Ljøsne, I., Cowley, L., Dyke, S., Gaff, C., Green, R., Hall, A., Johns, A. L., Knoppers, B. M., Mulrine, S., Patch, C., Winkler, E., & Murtagh, M. J. (2021). Return of individual research results from genomic research: A systematic review of stakeholder perspectives. PloS One, 16(11), e0258646.

Healthcare Information Technology

• Beyene, M., Toussaint, P. A., Thiebes, S., Schlesner, M., Brors, B., & Sunyaev, A. (2022). A scoping review of distributed ledger technology in genomics: Thematic analysis and directions for future research. Journal of the American Medical Informatics Association, 29(8), 1433–1444.
• Vorisek, C. N., Lehne, M., Klopfenstein, S., Mayer, P. J., Bartschke, A., Haese, T., & Thun, S. (2022). Fast Healthcare Interoperability Resources (FHIR) for interoperability in health research: Systematic review. JMIR Medical Informatics, 10(7), e35724.
• Papadopoulos, P., Soflano, M., Chaudy, Y., Adejo, W., and Connolly, T. M. (2022). A systematic review of technologies and standards used in the development of rule-based clinical decision support systems. Health and Technology, 12(1), 713–727 (2022).
• Lang, M., Lemieux, S., Hébert, J., Sauvageau, G., & Zawati, M. H. (2021). Legal and ethical considerations for the design and use of web portals for researchers, clinicians, and patients: Scoping literature review. Journal of Medical Internet Research, 23(11), e26450.
• Pammi, M., Aghaeepour, N., & Neu, J. (2022). Multiomics, artificial intelligence, and precision medicine in perinatology. Pediatric Research. Advance online publication.