ELSI in Review • February 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 February 2024 set explores ethical considerations for biobanking in Africa, genetic counseling for racially and ethnically diverse populations, 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

• Coulombe, F., & Laberge, A.-M. (2024). The need to consider context: A systematic review of factors involved in the consent process for genetic tests from the perspective of patients. AJOB Empirical Bioethics. Advance online publication.
• Grauman, Å., Ancillotti, M., Veldwijk, J., & Mascalzoni, D. (2023). Precision cancer medicine and the doctor-patient relationship: A systematic review and narrative synthesis. BMC Medical Informatics and Decision Making, 23(1), Article 286.
• Shete, M., Kocher, M., Pratt, R., Lee, H., & Zierhut, H. (2023). Genetic counseling processes and strategies for racially and ethnically diverse populations: A systematic review. Journal of Genetic Counseling. Advance online publication.
• van Pottelberghe, S., Kupper, N., Scheirlynck, E., Amin, A. S., Wilde, A. A. M., Hofman, N., Callus, E., Biller, R., Nekkebroeck, J., Van Dooren, S., Hes, F. J., & van der Crabben, S. N. (2023). Are disease-specific patient-reported outcomes measures (PROMs) used in cardiogenetics? A systematic review. European Journal of Human Genetics. Advance online publication.
• Van Hoyweghen, S., Claes, K. B., de Putter, R., Wakefield, C., Van Schoors, M., Hellemans, S., & Verhofstadt, L. (2024). The psychological impact of genetic testing in childhood cancer: A systematic review. Psycho-Oncology, 33(1), Article e6279.

Research Participation

• Amoakoh-Coleman, M., Vieira, D., & Abugri, J. (2023). Ethical considerations for biobanking and use of genomics data in Africa: A narrative review. BMC Medical Ethics, 24(1), Article 108.
• Gwynne, K., Jiang, S., Venema, R., Christie, V., Boughtwood, T., Ritha, M., Skinner, J., Ali, N., Rambaldini, B., & Calma, T. (2023). Genomics and inclusion of Indigenous peoples in high income countries. Human Genetics, 142(9), 1407–1416.
• Mitchell, L. A., Jivani, K., Young, M.-A., Jacobs, C., & Willis, A. M. (2024). Systematic review of the uptake and outcomes from returning secondary findings to adult participants in research genomic testing. Journal of Genetic Counseling. Advance online publication.
• Peltier, C., Dickson, S., Grandpierre, V., Oltean, I., McGregor, L., Hageltorn, E., & Young, N. L. (2024). Culturally appropriate consent processes for community-driven indigenous child health research: A scoping review. BMC Medical Ethics, 25(1), Article 3.

Policy

• Vassos, M., Faragher, R., Nankervis, K., Breedt, R., Boyle, F., Smith, S., & Kelly, J. (2023). The ethical, legal, and social implications of genomics and disability: Findings from a scoping review and their human rights implications. Advances in Neurodevelopmental Disorders. Advance online publication.
• Iltis, A. S., Koster, G., Reeves, E., & Matthews, K. R. W. (2023). Ethical, legal, regulatory, and policy issues concerning embryoids: A systematic review of the literature. Stem Cell Research & Therapy, 14(1), Article 209.

Social Context

• Roth, W. D., van Stee, E. G., & Regla-Vargas, A. (2023). Conceptualizations of race: Essentialism and constructivism. Annual Review of Sociology, 49(1), 39–58.
• Astărăstoae, V., Rogozea, L. M., Aron, I., & Botezat, D. (2023). The new mythology of the body and the transformation of the therapeutic space. American Journal of Therapeutics, 30(5), Article e439.
• Chaly, V., & Popova, O. V. (2023). Narrativization of human population genetics: Two cases in Iceland and Russia. Public Understanding of Science. Advance online publication.
• Hofmann, B. (2023). Biases in bioethics: A narrative review. BMC Medical Ethics, 24(1), Article 17.
• Lipscomb, J., Gálvez-Peralta, M., Cropp, C. D., Delgado, E., Crutchley, R., Calinski, D., & Iwuchukwu, O. (2023). A genetics-focused lens on social constructs in pharmacy education. American Journal of Pharmaceutical Education, 87(9), Article 100077.