ELSI in Review • June 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 June 2022 set explores distributed ledger technology in genomics, variant classification, research oversight, 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!

Data Sharing and Stewardship

• 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. Advance online publication.
• Tan, V. Y., & Timpson, N. J. (2022). The UK biobank: A shining example of genome-wide association study science with the power to detect the murky complications of real-world epidemiology. Annual Review of Genomics and Human Genetics. Advance online publication.
• Linder, J. E., Bastarache, L., Hughey, J. J., & Peterson, J. F. (2021). The role of electronic health records in advancing genomic medicine. Annual Review of Genomics and Human Genetics, 22(1), 219–238.

Delivery of Medical Genetics Services

• Curtin, M., Somayaji, D., & Dickerson, S. S. (2022). Precision medicine testing and disparities in health care for individuals with non-small cell lung cancer: A narrative review. Oncology Nursing Forum, 49(3), 257–272. 
• Chou, A. F., Duncan, A. R., Hallford, G., Kelley, D. M., & Deane, L. W. (2021). Barriers and strategies to integrate medical genetics and primary care in underserved populations: A scoping review. Journal of Community Genetics, 12(1), 291–309.
• Hughes Halbert, C. (2022). Equity in genomic medicine. Annual Review of Genomics and Human Genetics, 23(1), 4.1-4.13.
• Gorrie, A., Gold, J., Cameron, C., Krause, M., & Kincaid, H. (2021). Benefits and limitations of telegenetics: A literature review. Journal of Genetic Counseling, 30(4), 924–937.
• Best, S., Vidic, N., An, K., Collins, F., & White, S. M. (2022). A systematic review of geographical inequities for accessing clinical genomic and genetic services for non-cancer related rare disease. European Journal of Human Genetics. Advance online publication.

Variant Classification, Clinical Utility, and Actionability

• Goddard, K., Lee, K., Buchanan, A. H., Powell, B. C., & Hunter, J. E. (2022). Establishing the medical actionability of genomic variants. Annual Review of Genomics and Human Genetics. Advance online publication.
• Johnson, F., Ulph, F., MacLeod, R., & Southern, K. W. (2022). Receiving results of uncertain clinical relevance from population genetic screening: Systematic review & meta-synthesis of qualitative research. European Journal of Human Genetics, 30(5), 520–531.
• Burke, W. (2021). Utility and diversity: Challenges for genomic medicine. Annual Review of Genomics and Human Genetics, 22(1), 1–24.
• Giles, H. H., Hegde, M. R., Lyon, E., Stanley, C. M., Kerr, I. D., Garlapow, M. E., & Eggington, J. M. (2021). The science and art of clinical genetic variant classification and its impact on test accuracy. Annual Review of Genomics and Human Genetics, 22(1), 285–307.

Research Oversight

• Ali, J., Cohn, B., Mwaka, E., Bollinger, J. M., Kwagala, B., Barugahare, J., Sewankambo, N. K., & Ochieng, J. (2021). A scoping review of genetics and genomics research ethics policies and guidelines for Africa. BMC Medical Ethics, 22(1), 1-15.
• Bonsu, D., Afoakwah, C. B., Abedi, M., Higgins, D., & Austin, J. J. (2022). Ethics reporting in forensic science research publications - A review. Forensic Science International, 335(1), 1-9.
• Sudoi, A., De Vries, J. & Kamuya, D. (2021). A scoping review of considerations and practices for benefit sharing in biobanking. BMC Medical Ethics, 22(1), 1-16.
• Wonkam, A., Munung, N. S., Dandara, C., Esoh, K. K., Hanchard, N. A., & Landoure, G. (2022). Five priorities of African genomics research: The next frontier. Annual Review of Genomics and Human Genetics. Advance online publication.
• Fleskes, R. E., Bader, A. C., Tsosie, K. S., Wagner, J. K., Claw, K. G., & Garrison, N. A. (2022). Ethical guidance in human paleogenomics: New and ongoing perspectives. Annual Review of Genomics and Human Genetics. Advance online publication.