Understanding the Return of Genomic Sequencing Results Process: Content Review of Participant Summary Letters in the eMERGE Research Network.

Autor: Lynch JA; Department of Communication, University of Cincinnati, Cincinnati, OH 45220, USA., Sharp RR; Biomedical Ethics, Mayo Clinic, Rochester, MN 55902, USA., Aufox SA; Center for Genomic Medicine, Feinberg School of Medicine, Northwestern University, Chicago, IL 60611, USA., Bland ST; Department of Biomedical Informatics, Vanderbilt University Medical Center, Nashville, TN 37232, USA., Blout C; Harvard Pilgrim Health Care Institute, Boston, MA 02115, USA., Bowen DJ; Department of Bioethics and Humanities, School of Medicine, University of Washington, Seattle, WA 98195, USA., Buchanan AH; Genomic Medicine Institute, Geisinger, Danville, PA 17822, USA., Halverson C; School of Medicine, Indiana University-Purdue University, Indianapolis, IN 46202, USA., Harr M; Center for Applied Genomics, Children's Hospital of Pennsylvania, Philadelphia, PA 19104, USA., Hebbring SJ; Marshfield Clinic Research Institute, Marshfield, WI 54449, USA., Henrikson N; Kaiser Permanente Washington Health Research Institute, Kaiser Permanente of Washington, Seattle, WA 98101, USA.; Department of Health Services, School of Public Health, University of Washington, Seattle, WA 98195, USA., Hoell C; Center for Genomic Medicine, Feinberg School of Medicine, Northwestern University, Chicago, IL 60611, USA., Holm IA; Department of Pediatrics, Harvard Medical School, Boston, MA 02115, USA.; Division of Genetics and Genomics, Boston Children's Hospital, Boston, MA 02115, USA., Jarvik G; Departments of Medicine (Medical Genetics) and Genome Sciences, University of Washington, Seattle, WA 98195, USA., Kullo IJ; Department of Cardiovascular Medicine, Mayo Clinic, Rochester, MN 55902, USA., Kochan DC; Department of Cardiovascular Medicine, Mayo Clinic, Rochester, MN 55902, USA., Larson EB; Kaiser Permanente Washington Health Research Institute, Kaiser Permanente of Washington, Seattle, WA 98101, USA.; Division of General Internal Medicine, University of Washington, Seattle, WA 98195, USA., Lazzeri A; Genomic Medicine Institute, Geisinger, Danville, PA 17822, USA., Leppig KA; Genetic Services, Kaiser Permanente of Washington, Seattle, WA 98101, USA.; University of Washington Biomedical and Health Informatics, Seattle, WA 98195, USA., Madden J; Division of Genetics and Genomics, Boston Children's Hospital, Boston, MA 02115, USA., Marasa M; Department of Medicine, Division of Nephrology, Columbia University Irving Medical Center, New York, NY 10032, USA., Myers MF; College of Medicine, University of Cincinnati, Cincinnati, OH 45220, USA.; Department of Pediatrics, Cincinnati Children's Hospital Medical Center, University of Cincinnati, Cincinnati, OH 45229, USA., Peterson J; Department of Biomedical Informatics, Vanderbilt University Medical Center, Nashville, TN 37232, USA.; Department of Medicine, Vanderbilt University Medical Center, Nashville, TN 37232, USA., Prows CA; Department of Pediatrics, Cincinnati Children's Hospital Medical Center, University of Cincinnati, Cincinnati, OH 45229, USA., Kulchak Rahm A; Genomic Medicine Institute, Geisinger, Danville, PA 17822, USA., Ralston J; Kaiser Permanente Washington Health Research Institute, Kaiser Permanente of Washington, Seattle, WA 98101, USA.; University of Washington Biomedical and Health Informatics, Seattle, WA 98195, USA., Milo Rasouly H; Department of Medicine, Division of Nephrology, Columbia University Irving Medical Center, New York, NY 10032, USA., Scrol A; Kaiser Permanente Washington Health Research Institute, Kaiser Permanente of Washington, Seattle, WA 98101, USA., Smith ME; Department of Medicine, Feinberg School of Medicine, Northwestern University, Chicago, IL 60611, USA., Sturm A; Genomic Medicine Institute, Geisinger, Danville, PA 17822, USA., Stuttgen K; Department of Cardiovascular Medicine, Mayo Clinic, Rochester, MN 55902, USA., Wiesner G; Department of Medicine, Vanderbilt University Medical Center, Nashville, TN 37232, USA.; Vanderbilt Clinical and Translational Hereditary Cancer Program, Vanderbilt-Ingram Cancer Center, Vanderbilt University Medical Center, Nashville, TN 37232, USA., Williams MS; Genomic Medicine Institute, Geisinger, Danville, PA 17822, USA., Wynn J; Department of Pediatrics, Columbia University Irving Medical Center, New York, NY 10027, USA., Williams JL; Genomic Medicine Institute, Geisinger, Danville, PA 17822, USA.
Jazyk: angličtina
Zdroj: Journal of personalized medicine [J Pers Med] 2020 May 13; Vol. 10 (2). Date of Electronic Publication: 2020 May 13.
DOI: 10.3390/jpm10020038
Abstrakt: A challenge in returning genomic test results to research participants is how best to communicate complex and clinically nuanced findings to participants in a manner that is scalable to the large numbers of participants enrolled. The purpose of this study was to examine the features of genetic results letters produced at each Electronic Medical Records and Genomics (eMERGE3) Network site to assess their readability and content. Letters were collected from each site, and a qualitative analysis of letter content and a quantitative analysis of readability statistics were performed. Because letters were produced independently at each eMERGE site, significant heterogeneity in readability and content was found. The content of letters varied widely from a baseline of notifying participants that results existed to more detailed information about positive or negative results, as well as materials for sharing with family members. Most letters were significantly above the Centers for Disease Control-suggested reading level for health communication. While continued effort should be applied to make letters easier to understand, the ongoing challenge of explaining complex genomic information, the implications of negative test results, and the uncertainty that comes with some types of test and result makes simplifying letter text challenging.
Databáze: MEDLINE