ELSI in Review • February 2022

About this listing

ELSI in Review is a listing of recently published, systematic reviews of the literature on key ELSI topics curated by CERA staff. Our February 2022 set explores experiences with and outcomes of genetic testing and counseling for special populations, evaluates decision support tools and the cost effectiveness of returning results, and other topics. 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!

Genetic Testing & Counseling: Opinions, Experiences, & Barriers to Access

• Crook, A., Jacobs, C., Newton-John, T., Richardson, E., & McEwen, A. (2021). Patient and relative experiences and decision-making about genetic testing and counseling for familial ALS and FTD: A systematic scoping review. Alzheimer Disease & Associated Disorders, 35(4), 374-385.
• Smith-Uffen, M., Bartley, N., Davies, G., & Best, M. (2021). Motivations and barriers to pursue cancer genomic testing: A systematic review. Patient Education and Counseling, 104(6), 1325-1334.
• Strnadová, I., Nevin, S. M., Scully, J. L., & Palmer, E. E. The opinions and experiences of people with intellectual disability regarding genetic testing and genetic medicine: A systematic review. Genetics in Medicine. Advance online publication.
• Young, J. L., Mak, J., Stanley, T., Bass, M., Cho, M. K., & Tabor, H. K. (2021). Genetic counseling and testing for Asian Americans: A systematic review. Genetics in Medicine, 23(8), 1424-1437.
• Zhong, A., Darren, B., Loiseau, B., He, L. Q. B., Chang, T., Hill, J., & Dimaras, H. (2021). Ethical, social, and cultural issues related to clinical genetic testing and counseling in low- and middle-income countries: A systematic review. Genetics in Medicine, 23(12), 2270-2280.

Psychological Outcomes Following Genetic Testing

• Mighton, C., Shickh, S., Uleryk, E., Pechlivanoglou, P., & Bombard, Y. (2021). Clinical and psychological outcomes of receiving a variant of uncertain significance from multigene panel testing or genomic sequencing: A systematic review and meta-analysis. Genetics in Medicine, 23(1), 22-33.
• Primiero, C. A., Yanes, T., Finnane, A., Soyer, H. P., & McInerney-Leo, A. M. (2021). A systematic review on the impact of genetic testing for familial melanoma II: Psychosocial outcomes and attitudes. Dermatology, 237(5), 816-826.

Prenatal Screening, Newborn Screening, & Pediatric Sequencing

• Downie, L., Halliday, J., Lewis, S., & Amor, D. J. (2021). Principles of genomic newborn screening programs: A systematic review. JAMA, 4(7), 1-12.
• Eichinger, J., Elger, B. S., Koné, I., Filges, I., Shaw, D., Zimmermann, B., & McLennan, S. (2021). The full spectrum of ethical issues in pediatric genome-wide sequencing: A systematic qualitative review. BMC Pediatrics, 21(1), 1-45.
• Zhytnik, L., Peters, M., Tilk, K., Simm, K., Tõnisson, N., Reimand, T., Maasalu, K., Acharya, G., Krjutškov, K., & Salumets, A.. (2021). From late fatherhood to prenatal screening of monogenic disorders: Evidence and ethical concerns. Human Reproduction Update, 27(6), 1056-1085.
• Kim N. K. (2021). A normative review on non-invasive prenatal diagnosis (NIPD): Focusing on the German discussion on PrenaTest®. Development & Reproduction, 25(2), 113–121.

Return of Results

• Fontes Marx, M., Ataguba, J. E., de Vries, Jantina, & Wonkam, A. (2021). Systematic review of the economic evaluation of returning incidental findings in genomic research. Frontiers in Public Health, 9(1), 1-7.
• Vears, D. F., Minion, J. T., Roberts, S. J., Cummings, J., Machirori, M., Blell, M., Budin-Ljøsne, I., Cowley, L., Dyke, S. O. M., Gaff, C., Green, R., Hall, A., Johns, A. L., Knoppers, B. M., Mulrine, S., Patch, C., Winkler, E., & Murtag, M. J. (2021). Return of individual research results from genomic research: A systematic review of stakeholder perspectives. PLoS One, 16(11), 1-71.

Ethical, Legal, and Social Issues in the Use of Genetic Information for Psychiatric and Neurodegenerative Disorders

• 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.
• Nurmi, S. M., Halkoaho, A., Moilanen, J., Remes, A. M., & Solje, E. (2021). The ethical implications of genetic testing in neurodegenerative diseases: A systematic review. Scandinavian Journal of Caring Sciences, 35(4), 1057–1074.

Effectiveness of Decision Support Aids

• Sebastian, A., Carroll, J. C., Oldfield, L. E., Mighton, C., Shickh, S., Uleryk, E., & Bombard, Y. (2021). Effect of genetics clinical decision support tools on health-care providers’ decision making: A mixed-methods systematic review. Genetics in Medicine, 23(4), 593-602.
• Yu, L., Yang, S., Zhang, C., Guo, P., Zhang, X., Xu, M., Tian, Q., Cui, X., & Zhang, W. (2021). Decision aids for prenatal testing: A systematic review and meta-analysis. Journal of Advanced Nursing, 77(10), 3964-3979.