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“It would be so much easier”: health system-led genetic risk notification—feasibility and acceptability of cascade screening in an integrated system

Assess the feasibility and acceptability of health system-led genetic risk notification in a US integrated health system. We conducted semi-structured phone interviews with individuals age 40–64 years who had undergone genetic sequencing, but had not yet received their results, assessing attitudes t...

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Autores principales: Henrikson, Nora B., Blasi, Paula R., Fullerton, Stephanie M., Grafton, Jane, Leppig, Kathleen A., Jarvik, Gail P., Larson, Eric B.
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Springer Berlin Heidelberg 2019
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6754469/
https://www.ncbi.nlm.nih.gov/pubmed/30843145
http://dx.doi.org/10.1007/s12687-019-00412-z
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author Henrikson, Nora B.
Blasi, Paula R.
Fullerton, Stephanie M.
Grafton, Jane
Leppig, Kathleen A.
Jarvik, Gail P.
Larson, Eric B.
author_facet Henrikson, Nora B.
Blasi, Paula R.
Fullerton, Stephanie M.
Grafton, Jane
Leppig, Kathleen A.
Jarvik, Gail P.
Larson, Eric B.
author_sort Henrikson, Nora B.
collection PubMed
description Assess the feasibility and acceptability of health system-led genetic risk notification in a US integrated health system. We conducted semi-structured phone interviews with individuals age 40–64 years who had undergone genetic sequencing, but had not yet received their results, assessing attitudes to direct outreach to relatives. During each interview, we collected contact information for adult relatives identified as members of the same system and attempted to identify each relative in administrative data. We conducted 20 interviews. Most participants expressed support for Kaiser Permanente Washington involvement in familial risk notification. Direct outreach to relatives received the most unqualified support; outreach to the relatives’ physician or interaction with the relatives’ electronic medical record received more tempered support. Support was motivated by the desire to have risk communicated accurately and quickly. The most common caveat was a desire to alert relatives before the health system contacted them. Of 57 named relatives who were members of the same health system, we retrieved a single match for 40 (70.2%) based on name or birthdate. Health system involvement in familial risk notification received support in a sample of patients in a US integrated health system, and identification of relatives is feasible.
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spelling pubmed-67544692019-10-07 “It would be so much easier”: health system-led genetic risk notification—feasibility and acceptability of cascade screening in an integrated system Henrikson, Nora B. Blasi, Paula R. Fullerton, Stephanie M. Grafton, Jane Leppig, Kathleen A. Jarvik, Gail P. Larson, Eric B. J Community Genet Original Article Assess the feasibility and acceptability of health system-led genetic risk notification in a US integrated health system. We conducted semi-structured phone interviews with individuals age 40–64 years who had undergone genetic sequencing, but had not yet received their results, assessing attitudes to direct outreach to relatives. During each interview, we collected contact information for adult relatives identified as members of the same system and attempted to identify each relative in administrative data. We conducted 20 interviews. Most participants expressed support for Kaiser Permanente Washington involvement in familial risk notification. Direct outreach to relatives received the most unqualified support; outreach to the relatives’ physician or interaction with the relatives’ electronic medical record received more tempered support. Support was motivated by the desire to have risk communicated accurately and quickly. The most common caveat was a desire to alert relatives before the health system contacted them. Of 57 named relatives who were members of the same health system, we retrieved a single match for 40 (70.2%) based on name or birthdate. Health system involvement in familial risk notification received support in a sample of patients in a US integrated health system, and identification of relatives is feasible. Springer Berlin Heidelberg 2019-03-06 2019-10 /pmc/articles/PMC6754469/ /pubmed/30843145 http://dx.doi.org/10.1007/s12687-019-00412-z Text en © The Author(s) 2019 OpenAccessThis article is distributed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made.
spellingShingle Original Article
Henrikson, Nora B.
Blasi, Paula R.
Fullerton, Stephanie M.
Grafton, Jane
Leppig, Kathleen A.
Jarvik, Gail P.
Larson, Eric B.
“It would be so much easier”: health system-led genetic risk notification—feasibility and acceptability of cascade screening in an integrated system
title “It would be so much easier”: health system-led genetic risk notification—feasibility and acceptability of cascade screening in an integrated system
title_full “It would be so much easier”: health system-led genetic risk notification—feasibility and acceptability of cascade screening in an integrated system
title_fullStr “It would be so much easier”: health system-led genetic risk notification—feasibility and acceptability of cascade screening in an integrated system
title_full_unstemmed “It would be so much easier”: health system-led genetic risk notification—feasibility and acceptability of cascade screening in an integrated system
title_short “It would be so much easier”: health system-led genetic risk notification—feasibility and acceptability of cascade screening in an integrated system
title_sort “it would be so much easier”: health system-led genetic risk notification—feasibility and acceptability of cascade screening in an integrated system
topic Original Article
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6754469/
https://www.ncbi.nlm.nih.gov/pubmed/30843145
http://dx.doi.org/10.1007/s12687-019-00412-z
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