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

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 resul...

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Autores principales: Lynch, John A., Sharp, Richard R., Aufox, Sharon A., Bland, Sarah T., Blout, Carrie, Bowen, Deborah J., Buchanan, Adam H., Halverson, Colin, Harr, Margaret, Hebbring, Scott J., Henrikson, Nora, Hoell, Christin, Holm, Ingrid A., Jarvik, Gail, Kullo, Iftikhar J., Kochan, David C., Larson, Eric B., Lazzeri, Amanda, Leppig, Kathleen A., Madden, Jill, Marasa, Maddalena, Myers, Melanie F., Peterson, Josh, Prows, Cynthia A., Kulchak Rahm, Alanna, Ralston, James, Milo Rasouly, Hila, Scrol, Aaron, Smith, Maureen E., Sturm, Amy, Stuttgen, Kelsey, Wiesner, Georgia, Williams, Marc S., Wynn, Julia, Williams, Janet L.
Formato: Online Artículo Texto
Lenguaje:English
Publicado: MDPI 2020
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7354464/
https://www.ncbi.nlm.nih.gov/pubmed/32413979
http://dx.doi.org/10.3390/jpm10020038
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author Lynch, John A.
Sharp, Richard R.
Aufox, Sharon A.
Bland, Sarah T.
Blout, Carrie
Bowen, Deborah J.
Buchanan, Adam H.
Halverson, Colin
Harr, Margaret
Hebbring, Scott J.
Henrikson, Nora
Hoell, Christin
Holm, Ingrid A.
Jarvik, Gail
Kullo, Iftikhar J.
Kochan, David C.
Larson, Eric B.
Lazzeri, Amanda
Leppig, Kathleen A.
Madden, Jill
Marasa, Maddalena
Myers, Melanie F.
Peterson, Josh
Prows, Cynthia A.
Kulchak Rahm, Alanna
Ralston, James
Milo Rasouly, Hila
Scrol, Aaron
Smith, Maureen E.
Sturm, Amy
Stuttgen, Kelsey
Wiesner, Georgia
Williams, Marc S.
Wynn, Julia
Williams, Janet L.
author_facet Lynch, John A.
Sharp, Richard R.
Aufox, Sharon A.
Bland, Sarah T.
Blout, Carrie
Bowen, Deborah J.
Buchanan, Adam H.
Halverson, Colin
Harr, Margaret
Hebbring, Scott J.
Henrikson, Nora
Hoell, Christin
Holm, Ingrid A.
Jarvik, Gail
Kullo, Iftikhar J.
Kochan, David C.
Larson, Eric B.
Lazzeri, Amanda
Leppig, Kathleen A.
Madden, Jill
Marasa, Maddalena
Myers, Melanie F.
Peterson, Josh
Prows, Cynthia A.
Kulchak Rahm, Alanna
Ralston, James
Milo Rasouly, Hila
Scrol, Aaron
Smith, Maureen E.
Sturm, Amy
Stuttgen, Kelsey
Wiesner, Georgia
Williams, Marc S.
Wynn, Julia
Williams, Janet L.
author_sort Lynch, John A.
collection PubMed
description 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.
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spelling pubmed-73544642020-08-05 Understanding the Return of Genomic Sequencing Results Process: Content Review of Participant Summary Letters in the eMERGE Research Network Lynch, John A. Sharp, Richard R. Aufox, Sharon A. Bland, Sarah T. Blout, Carrie Bowen, Deborah J. Buchanan, Adam H. Halverson, Colin Harr, Margaret Hebbring, Scott J. Henrikson, Nora Hoell, Christin Holm, Ingrid A. Jarvik, Gail Kullo, Iftikhar J. Kochan, David C. Larson, Eric B. Lazzeri, Amanda Leppig, Kathleen A. Madden, Jill Marasa, Maddalena Myers, Melanie F. Peterson, Josh Prows, Cynthia A. Kulchak Rahm, Alanna Ralston, James Milo Rasouly, Hila Scrol, Aaron Smith, Maureen E. Sturm, Amy Stuttgen, Kelsey Wiesner, Georgia Williams, Marc S. Wynn, Julia Williams, Janet L. J Pers Med Article 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. MDPI 2020-05-13 /pmc/articles/PMC7354464/ /pubmed/32413979 http://dx.doi.org/10.3390/jpm10020038 Text en © 2020 by the authors. Licensee MDPI, Basel, Switzerland. This article is an open access article distributed under the terms and conditions of the Creative Commons Attribution (CC BY) license (http://creativecommons.org/licenses/by/4.0/).
spellingShingle Article
Lynch, John A.
Sharp, Richard R.
Aufox, Sharon A.
Bland, Sarah T.
Blout, Carrie
Bowen, Deborah J.
Buchanan, Adam H.
Halverson, Colin
Harr, Margaret
Hebbring, Scott J.
Henrikson, Nora
Hoell, Christin
Holm, Ingrid A.
Jarvik, Gail
Kullo, Iftikhar J.
Kochan, David C.
Larson, Eric B.
Lazzeri, Amanda
Leppig, Kathleen A.
Madden, Jill
Marasa, Maddalena
Myers, Melanie F.
Peterson, Josh
Prows, Cynthia A.
Kulchak Rahm, Alanna
Ralston, James
Milo Rasouly, Hila
Scrol, Aaron
Smith, Maureen E.
Sturm, Amy
Stuttgen, Kelsey
Wiesner, Georgia
Williams, Marc S.
Wynn, Julia
Williams, Janet L.
Understanding the Return of Genomic Sequencing Results Process: Content Review of Participant Summary Letters in the eMERGE Research Network
title Understanding the Return of Genomic Sequencing Results Process: Content Review of Participant Summary Letters in the eMERGE Research Network
title_full Understanding the Return of Genomic Sequencing Results Process: Content Review of Participant Summary Letters in the eMERGE Research Network
title_fullStr Understanding the Return of Genomic Sequencing Results Process: Content Review of Participant Summary Letters in the eMERGE Research Network
title_full_unstemmed Understanding the Return of Genomic Sequencing Results Process: Content Review of Participant Summary Letters in the eMERGE Research Network
title_short Understanding the Return of Genomic Sequencing Results Process: Content Review of Participant Summary Letters in the eMERGE Research Network
title_sort understanding the return of genomic sequencing results process: content review of participant summary letters in the emerge research network
topic Article
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7354464/
https://www.ncbi.nlm.nih.gov/pubmed/32413979
http://dx.doi.org/10.3390/jpm10020038
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