ELSI in Review • January 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 January 2023 set explores the ethics of digital twins in medicine, diversity in genetic epidemiology research, 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!

Perceptions of Screening

• Gereis, J., Hetherington, K., Ha, L., Robertson, E. G., Ziegler, D. S., Barlow-Stewart, K., Tucker, K. M., Marron J. M., & Wakefield, C. E. Parents’ understanding of genome and exome sequencing for pediatric health conditions: A systematic review. (2022). European Journal of Human Genetics, 30, 1216–1225.
• Shen, E. C., Srinivasan, S., Passero, L. E., Allen, C. G., Dixon, M., Foss, K., Halliburton, B., Milko, L. V., Smit, A. K., Carlson, R., & Roberts, M. C. Barriers and facilitators for population genetic screening in healthy populations: A systematic review. (2022). Frontiers in Genetics, 13, Article 865384.

Population Categorization

• Mauro, M., Allen, D. S., Dauda, B., Molina, S. J., Neale, B. M., & Lewis, A. C. (2022). A scoping review of guidelines for the use of race, ethnicity, and ancestry reveals widespread consensus but also points of ongoing disagreement. The American Journal of Human Genetics, 109(12), 2110-2125.
• Caliebe, A., Tekola-Ayele, F., Darst, B. F., Wang, X., Song, Y. E., Gui, J., Sebro, R. A., Balding, D. J., Saad, M., Dubé, M. P. & IGES ELSI Committee. (2022). Including diverse and admixed populations in genetic epidemiology research. Genetic Epidemiology, 46(7), 347-371.

Future Medicine

• Iqbal, J. D., Krauthammer, M., & Biller-Andorno, N. (2022). The use and ethics of digital twins in medicine. Journal of Law, Medicine & Ethics, 50(3), 583-596.
• de Kanter, A. F. J., Jongsma, K. R., Verhaar, M. C., & Bredenoord, A. L. (2022). The ethical implications of tissue engineering for regenerative purposes: A systematic review. Tissue Engineering Part B: Reviews. Advance online publication.
• Karimian, G., Petelos, E., & Evers, S. M. (2022). The ethical issues of the application of artificial intelligence in healthcare: A systematic scoping review. AI and Ethics, 2, 539–551.

Return of Results

• Robertson, A. J., Tan, N. B., Spurdle, A. B., Metke-Jimenez, A., Sullivan, C., & Waddell, N. (2022). Reanalysis of genomic data: An overview of the mechanisms and complexities of clinical adoption. Genetics in Medicine, 24(4), 798-810.
• Law, W. K., Yaremych, H. E., Ferrer, R. A., Richardson, E., Wu, Y. P., & Turbitt, E. (2022). Decision-making about genetic health information among family dyads: A systematic literature review. Health Psychology Review, 16(3), 412-429.
• Winkler, E. C., & Knoppers, B. M. (2022). Ethical challenges of precision cancer medicine. Seminars in Cancer Biology, 84, 263-270.
• van der Schaar, J., Visser, L. N., Bouwman, F. H., Ket, J. C., Scheltens, P., Bredenoord, A. L., & van der Flier, W. M. (2022). Considerations regarding a diagnosis of Alzheimer’s disease before dementia: A systematic review. Alzheimer's Research & Therapy, 14, Article 31.
• Llubes-Arrià, L., Sanromà-Ortíz, M., Torné-Ruiz, A., Carillo-Álvarez, E., García-Expósito, J., & Roca, J. (2022). Emotional experience of the diagnostic process of a rare disease and the perception of support systems: A scoping review. Journal of Clinical Nursing, 31(1-2), 20-31.
• Wallingford, C. K., Kovilpillai, H., Jacobs, C., Turbitt, E., Primiero, C. A., Young, M. A., Brockman, D. G., Soyer, H. P., McInerney-Leo, A. M. & Yanes, T. (2022). Models of communication for polygenic scores and associated psychosocial and behavioral effects on recipients: A systematic review. Genetics in Medicine. Advance online publication.

Healthcare Systems

• Dixon, P., Keeney, E., Taylor, J. C., Wordsworth, S., & Martin, R. M. (2022). Can polygenic risk scores contribute to cost-effective cancer screening? A systematic review. Genetics in Medicine, 24(8), 1604-1617.
• Bednar, E. M., Nitecki, R., Krause, K. J., & Rauh-Hain, J. A. (2022). Interventions to improve delivery of cancer genetics services in the United States: A scoping review. Genetics in Medicine, 24(6), 1176-1186.

Tools

• Vandemeulebroucke, T., Denier, Y., Mertens, E., & Gastmans, C. (2022). Which framework to use? A systematic review of ethical frameworks for the screening or evaluation of health technology innovations. Science and Engineering Ethics, 28, Article 26.
• Loosman, I., & Nickel, P. J. (2022). Towards a design toolkit of informed consent models across fields: A systematic review. Science and Engineering Ethics, 28, Article 42.