ELSI in Review • May 2022

About this listing

ELSI in Review is a listing of recently published, systematic reviews of the literature on key ELSI topics curated by CERA staff. Our May 2022 set explores person-centered language, risk communication, experiences with results of uncertain clinical relevance, 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!

Science Communication

• Arnhart, C., Neale, M., Collins, C., Chesher, T., Coffey, S., Rogers, T. C., Ottwell, R., & Hartwell, M. (2022). The use of person-centered language in scientific research articles focused on autism. Journal of Developmental & Behavioral Pediatrics, 43(2), 63-70.
• Duello, T. M., Rivedal, S., Wickland, C., & Weller, A. (2021). Race and genetics versus ‘race’ in genetics: A systematic review of the use of African ancestry in genetic studies. Evolution, Medicine, and Public Health, 9(1), 2021, 232-245.

Health Communication

• Gupta, A., Cafazzo, J. A., IJzerman, M. J., Swart, J. F., Vastert, S., Wulffraat, N. M., Benseler, S., Marshall, D., Yeung, R., & Twilt, M. (2021). Genomic health literacy interventions in pediatrics: Scoping review. Journal of Medical Internet Research, 23(12), 1-18.
• Jung, S. Y., Lee, K., & Hwang, H. (2021). Recent trends of healthcare information and communication technologies in pediatrics: A systematic review. Clinical and Experimental Pediatrics. Advance online publication.
• Zhao, J., Guan, Y., & McBride, C. M. (2022). A systematic review of theory-informed strategies used in interventions fostering family genetic risk communication. Patient Education and Counseling. Advance online publication.
• Dattilo, T. M., Lipak, K. G., Clark, O. E., Gehred, A., Sampson, A., Quinn, G., Zajo, K., Sutter, M. E., Bowman-Curci, M., Gardner, M., Gerhardt, C. A., & Nahata, L. (2021). Parent-child communication and reproductive considerations in families with genetic cancer predisposition syndromes: A systematic review. Journal of Adolescent and Young Adult Oncology, 10(1), 15–25.
• 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. Advance online publication.

Healthcare Systems

• de Belvis, A. G., Pellegrino, R., Castagna, C., Morsella, A., Pastorino, R., & Boccia, S. (2021). Success factors and barriers in combining personalized medicine and patient centered care in breast cancer. Results from a systematic review and proposal of conceptual framework. Journal of Personalized Medicine, 11(7), 1-15.
• Scheinberg, T., Young, A., Woo, H., Goodwin, A., Mahon, K. L., & Horvath, L. G. (2021). Mainstream consent programs for genetic counseling in cancer patients: A systematic review. Asia-Pacific Journal of Clinical Oncology, 17(3), 163–177.
• Grant, P., Langlois, S., Lynd, L. D., GenCOUNSEL Study, Austin, J. C., & Elliott, A. M. (2021). Out-of-pocket and private pay in clinical genetic testing: A scoping review. Clinical Genetics, 100(5), 504–521.
• Nichol, A., Batten, J., Halley, M., Axelrod, J., Sankar, P., & Cho, M. (2021). A Typology of existing machine learning–based predictive analytic tools focused on reducing costs and improving quality in health care: Systematic search and content analysis. Journal of Medical Internet Research, 23(6), 1-10.

Carer and Patient Perspectives

• Fisher, V., Fraser, L., & Taylor, J. (2021). Experiences of fathers of children with a life-limiting condition: A systematic review and qualitative synthesis. BMJ Supportive & Palliative Care. Advance online publication.
• Badawy, S. M., Beg, U., Liem, R. I., Chaudhury, S., & Thompson, A. A. (2021). A systematic review of quality of life in sickle cell disease and thalassemia after stem cell transplant or gene therapy. Blood Advances, 5(2), 570–583.
• Mahmood, S., Law, S., & Bombard, Y. (2022). "I have to start learning how to live with becoming sick": A scoping review of the lived experiences of people with Huntington's disease. Clinical Genetics, 101(1), 3–19.