ELSI in Review • October 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 October 2022 set explores disclosure of secondary findings, problems with the use of race in genetics, and ethical and legal issues in gamete donation. 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!

Race and Human Genetics

• Yéré, H. M., Machirori, M., & De Vries, J. (2022). Unpacking race and ethnicity in African genomics research. Nature Reviews Genetics, 1-2.
• Kaplan, J. M., & Fullerton, S. M. (2022). Polygenic risk, population structure and ongoing difficulties with race in human genetics. Philosophical Transactions of the Royal Society B, 377(1852), 20200427.
• Anderson, A. N., Chan, A. R., & Roman, Y. M. (2022). Pharmacogenomics and clinical cultural competency: Pathway to overcome the limitations of race. Pharmacogenomics, 23(6), 363-370.

Public Engagement

• Baik, E. S., Koshy, A., & Hardy, B. W. (2022). Communicating CRISPR: Challenges and opportunities in engaging the public. Progress in Molecular Biology and Translational Science 188(1), 171-193.
• Atutornu, J., Milne, R., Costa, A., Patch, C., & Middleton, A. (2022). Towards equitable and trustworthy genomics research. EBioMedicine 76, 103879.
• Donovan, B. M. (2022). Ending genetic essentialism through genetics education. Human Genetics and Genomics Advances 3(1), 100058. 

Research Ethics

• Taquette, S. R., & Borges da Matta Souza, L. M. (2022). Ethical dilemmas in qualitative research: A critical literature review. International Journal of Qualitative Methods 21, 16094069221078731.
• Kolarcik, C. L., Bledsoe, M. J., & O’Leary, T. J. (2022). Returning individual research results to “vulnerable” individuals. The American Journal of Pathology 192(9), 1218-1229. 

Clinical Translation of Genetics and Genomics

• Morrow, A., Chan, P., Tucker, K. M., & Taylor, N. (2021). The design, implementation, and effectiveness of intervention strategies aimed at improving genetic referral practices: A systematic review of the literature. Genetics in Medicine 23(12), 2239-2249.
• Sapp, J. C., Facio, F. M., Cooper, D., Lewis, K. L., Modlin, E., van der Wees, P., & Biesecker, L. G. (2021). A systematic literature review of disclosure practices and reported outcomes for medically actionable genomic secondary findings. Genetics in Medicine 23(12), 2260-2269.
• 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 30(6), 645-652.

Novel Technologies

• Leo, C. G., Tumolo, M. R., Sabina, S., Colella, R., Recchia, V., Ponzini, G., Fotiadis, D. I., Bodini, A. & Mincarone, P. (2022). Health technology assessment for in silico medicine: Social, ethical and legal aspects. International Journal of Environmental Research and Public Health 19(3), 1510.
• Almeida, M., & Ranisch, R. (2022). Beyond safety: Mapping the ethical debate on heritable genome editing interventions. Humanities and Social Sciences Communications, 9(1), 1-14. 

Reproduction

• Ghorbani, F., & Latifnejad Roudsari, R. (2022). A narrative review of the legal, jurisprudential and ethical aspects of embryo donation: Implications for infertility counselling. Journal of Midwifery and Reproductive Health 10(1), 3055-3065.
• Suzumori, N. (2022). What are the ethical issues involved in noninvasive prenatal testing in Japan? Journal of Obstetrics and Gynaecology Research 48(2), 300-305.
• Siermann, M., Tšuiko, O., Vermeesch, J. R., Raivio, T., & Borry, P. (2022). A review of normative documents on preimplantation genetic testing: Recommendations for PGT-P. Genetics in Medicine 24(6), 1165-1175.
• Ezeome, I. V. (2022). Gamete donation—A review of ethical and legal issues. African Journal of Reproductive Health 26(3), 124-135.
• Grafft, N., Dwyer, A. A., & Pineros-Leano, M. (2022). Latinx individuals’ knowledge of, preferences for, and experiences with prenatal genetic testing: A scoping review. Reproductive Health 19(1), 1-21.

Artificial Intelligence

• Anagnostou, M., Karvounidou, O., Katritzidaki, C., Kechagia, C., Melidou, K., Mpeza, E., Konstantinidis, I., Kapantai, E., Berberidis, C., Magnisalis, I., & Peristeras, V. (2022). Characteristics and challenges in the industries towards responsible AI: A systematic literature review. Ethics and Information Technology 24(3), 1-18. 
• Gwagwa, A., Kazim, E., & Hilliard, A. (2022). The role of the African value of Ubuntu in global AI inclusion discourse: A normative ethics perspective. Patterns 3(4), 100462.
• Ashok, M., Madan, R., Joha, A., & Sivarajah, U. (2022). Ethical framework for artificial intelligence and digital technologies. International Journal of Information Management 62(C), 102433.