ELSI in Review • September 2024

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 September 2024 set explores public attitudes towards health-related genomics, returning genetic results to Indigenous communities, 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!

Clinical Genetics

• Jansen, S. N. G., Kamphorst, B. A., Mulder, B. C., van Kamp, I., Boekhold, S., van den Hazel, P., & Verweij, M. F. (2024). Ethics of early detection of disease risk factors: A scoping review. BMC Medical Ethics, 25(1), Article 25.
• Patrinos, D., Ghaly, M., Al-Shafai, M., & Zawati, M. H. (2023). Legal approaches to risk of harm in genetic counseling: Perspectives from Quebec and Qatar. Frontiers in Genetics, 14.
• Hendricks-Sturrup, R. M., Yankah, S. E., & Lu, C. Y. (2024). Applying an ELSI lens to real-world data and novel genomic insights for personalized mental healthcare. Frontiers in Genetics, 15.

Diversity, Equity, and Inclusion

• Baynam, G., Baker, S., Steward, C., Summar, M., Halley, M., & Pariser, A. (2024). Increasing diversity, equity, inclusion, and accessibility in rare disease clinical trials. Pharmaceutical Medicine, 38(4), 261–276.
• Hardcastle, F., Lyle, K., Horton, R., Samuel, G., Weller, S., Ballard, L., Thompson, R., Trindade, L. V. D. P., Urrego, J. D. G., Kochin, D., Johnson, T., Tatz-Wieder, N., Hill, E. R., Adams, F. R., Eskandar, Y., Harriss, E., Tsosie, K. S., Dixon, P., Mackintosh, M., … Lucassen, A. (2024). The ethical challenges of diversifying genomic data: A qualitative evidence synthesis. Cambridge Prisms: Precision Medicine, 2, Article e1.
• Madden, E. B., Hindorff, L. A., Bonham, V. L., Akintobi, T. H., Burchard, E. G., Baker, K. E., Begay, R. L., Carpten, J. D., Cox, N. J., Di Francesco, V., Dillard, D. A., Fletcher, F. E., Fullerton, S. M., Garrison, N. A., Hammack-Aviran, C. M., Hiratsuka, V. Y., Hildreth, J. E. K., Horowitz, C. R., Hughes Halbert, C. A., … Green, E. D. (2024). Advancing genomics to improve health equity. Nature Genetics, 56(5), 752–757.
   

Data Privacy

• Khatiwada, P., Yang, B., Lin, J.-C., & Blobel, B. (2024). Patient-generated health data (PGHD): Understanding, requirements, challenges, and existing techniques for data security and privacy. Journal of Personalized Medicine, 14(3), Article 3.
• D’Amato, M. E., Joly, Y., Lynch, V., Machado, H., Scudder, N., & Zieger, M. (2024). Ethical considerations for forensic genetic frequency databases: First report conception and development. Forensic Science International: Genetics, 71, Article 103053.
• Cho, H., Froelicher, D., Dokmai, N., Nandi, A., Sadhuka, S., Hong, M. M., & Berger, B. (2024). Privacy-enhancing technologies in biomedical data science. Annual Review of Biomedical Data Science, 7, 317–343.

Public Attitudes and Engagement

• Pearce, A., Mitchell, L. A., Best, S., Young, M.-A., & Terrill, B. (2024). Publics’ knowledge of, attitude to and motivation towards health-related genomics: A scoping review. European Journal of Human Genetics, 32(7), 747–758.
• Appiah, R., Raviola, G., & Weobong, B. (2024). Balancing ethics and culture: A scoping review of ethico-cultural and implementation challenges of the individual-based consent model in African research. Journal of Empirical Research on Human Research Ethics, 19(3), 143–172.
• Arango-Isaza, E., Aninao, M. J., Campbell, R., Martínez, F. I., Shimizu, K. K., & Barbieri, C. (2023). Bridging the gap: Returning genetic results to Indigenous communities in Latin America. Frontiers in Genetics, 14.
• Salisbury, A., Ciardi, J., Norman, R., Smit, A. K., Cust, A. E., Low, C., Caruana, M., Gordon, L., Canfell, K., Steinberg, J., & Pearce, A. (2024). Public preferences for genetic and genomic risk-informed chronic disease screening and early detection: A systematic review of discrete choice experiments. Applied Health Economics and Health Policy. Advance online publication.