ELSI in Review • June 2025

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 2025 set explores Indigenous data sovereignty, perspectives on polygenic scores, 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!

Cancer Genetics

• Avsec, E., Blatnik, A., & Krajc, M. (2025). Secondary findings in hereditary cancer genes after germline genetic testing—Systematic review of literature. Human Genetics. Advance online publication.
• Reveiz, M., Bouhouita-Guermech, S., Blackmore, K. M., Chiquette, J., Demers, É., Dorval, M., Lambert-Côté, L., Nabi, H., Pashayan, N., Soucy, P., Turgeon, A., Walker, M. J., Knoppers, B. M., Chiarelli, A. M., Simard, J., & Joly, Y. (2025). Genetic discrimination in insurance and employment based on personalized risk stratification for breast cancer screening. Frontiers in Genetics, 16, Article 1481863.
• Tasnim, S., Lim, P. X. H., Griva, K., & Ngeow, J. (2025). Identifying the psychosocial barriers and facilitators associated with the uptake of genetic services for hereditary cancer syndromes: A systematic review of qualitative studies. Health Psychology Review, 19(1), 172–199.

Data Management

• Christofidou, M., Arvanitis, T. N., Kalra, D., Lea, N., Shabani, M., & Coorevits, P. (2025). Data altruism and the “consent” question: A study into the “consent” models used under the GDPR and how the data altruism mechanism can act as a potential solution for the research community in the reuse of health data. Frontiers in Medicine, 11, Article 1489925.
• Halmai, N. B., Taitingfong, R., Jennings, L. L., Yracheta, J., Garba, I., Lund, J. R., Curley, C. A., Claw, K. G., Taualii, M., Garrison, N. A., & Carroll, S. R. (2025). Indigenous data sovereignty in genomics and human genetics: Genomic equity and justice for Indigenous peoples. Annual Review of Genomics and Human Genetics. Advance online publication.
• Liu, H., Liu, Y., Zhao, Y., Ma, Y., Chen, Q., Xu, H., Wang, X., Guo, X., Wang, H., Chen, Z., Zhang, S., & Han, B. (2025). A scoping review of human genetic resources management policies and databases in high- and middle-low-income countries. BMC Medical Ethics, 26, Article 37.
• Mohammadzadeh, A., Farjaminejad, S., Patel, P., Nanyonga, S., Ahmad, R., Stavropoulou, C., & Kozlakidis, Z. (2025). Biobanking in Sub-Saharan Africa: A review of data protection frameworks. Biopreservation and Biobanking. Advance online publication.
• Rush, L., Schmid, M., & Raptis, G. (2025). Privacy challenges in genomic data: A scoping review of risks, mitigation strategies, and research gaps. In W. Buntine, M. Fjeld, T. Tran, M.-T. Tran, B. Huynh Thi Thanh, & T. Miyoshi (Eds.), Information and Communication Technology (pp. 416–430). Springer Nature.

Legal Implications

• Chao, A. E., Krishna Murthy, S. B., & Sabatello, M. (2025). Views of judges and potential jurors on responsibility for behavior in tort litigation in the genomic era. Journal of Law and the Biosciences, 12(1), Article lsaf005.
• Refolo, P., Ferracuti, S., Grassi, S., Raimondi, C., Mercuri, G., Zedda, M., Aulino, G., Spagnolo, A. G., & Oliva, A. (2025). Ethical issues in the use of genetic predictions of aggressive behavior in the criminal justice system: A systematic review. Frontiers in Genetics, 16, Article 1599750.

Clinical Genetics

• Andreoli, L., Peeters, H., Van Steen, K., & Dierickx, K. (2025). Polygenic risk scores in the clinic: A systematic review of stakeholders’ perspectives, attitudes, and experiences. European Journal of Human Genetics, 33(3), 266–280.
• Duong, D., & Solomon, B. D. (2025). Artificial intelligence in clinical genetics. European Journal of Human Genetics, 33(3), 281–288.
• Zayhowski, K., Horowitz, K., Bostrom, M., Mittendorf, K. F., Kocher, M., Austin, J. J., & MacFarlane, I. M. (2025). Patient care practices for LGBTQ+ individuals in clinical genetics: A scoping review. Journal of Genetic Counseling, 34(3), Article e70022.

Artificial Intelligence

• Aufieri, R., & Mastrocola, F. (2025). Balancing technology, ethics, and society: A review of artificial intelligence in embryo selection. Information, 16(1), Article 18.
• Hussain, S. A., Bresnahan ,Mary, & and Zhuang, J. (2025). The bias algorithm: How AI in healthcare exacerbates ethnic and racial disparities – A scoping review. Ethnicity & Health, 30(2), 197–214.
• Mishra, A., Majumder, A., Kommineni, D., Anna Joseph, C., Chowdhury, T., & Anumula, S. K. (2025). Role of generative artificial intelligence in personalized medicine: A systematic review. Cureus, 17(4), Article e82310.