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Dublin Core
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Title
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April 2020 List
Text
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Citation List Month
April 2020 List
URL Address
<a href="https://jim.bmj.com/content/68/1/91" target="_blank" rel="noreferrer noopener">https://jim.bmj.com/content/68/1/91</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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Family attitudes toward genomic sequencing in children with cardiac disease
Publisher
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Journal of Investigative Medicine
Date
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2020
Subject
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child; conference abstract; confidentiality; consumer; controlled study; Family Attitudes; family planning; genetic discrimination; grounded theory; health care system; heart center; Heart Diseases -- Mortality; human; human tissue; insurance; interrater reliability; perception; privacy; prognosis; resource allocation; semi structured interview; sequence analysis; surgery; transplantation; trust; uncertainty
Creator
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Gal D; Deuitch N; Tang R; Magnus D; Char D
Description
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Purpose of study Care for children with cardiac disease often involves difficult decisions and clinical uncertainty. Genomic Sequencing (GS) promises to improve clinical prognostics and could impact how difficult decisions are made. We sought to determine how GS results might alter family attitudes towards bedside care choices. Methods used We conducted semi-structured interviews of 35 families at a high-volume pediatric heart center. We discussed previous experience with and understanding of GS, perceptions toward GS in real and hypothetical scenarios, and support needed for implementing GS in clinical care. Responses were analyzed using grounded theory and a codebook was developed. Researchers discussed interpretation of codes and identified and described emerging themes. Interrater reliability was 0.91. Summary of results Three themes emerged: 1) Is knowledge beneficial? Families saw benefits in GS-the ability to provide specific and/or earlier diagnoses, clarify prognosis, change family planning, and avoid unnecessary/additional testing-but also struggled with the sense that GS results did not translate into meaningful changes in clinical care. 2) Should GS guide life limiting decisions and resource allocation? Some parents felt using GS to justify withdrawal of care or allocation of scarce resources (like organs for transplantation) could represent genetic discrimination; other parents felt GS should be used when allocating resources, even if it meant limitation of treatment options for their child. 3) Is giving GS results to the healthcare system safe? All families indicated mistrust of at least one facet of the medical system including insurance companies, maintenance of confidentiality, and the incentive structure in healthcare. Some also expressed distrust of direct to consumer GS testing. Conclusions In families of children with cardiac disease, trust is lacking in perceptions of the clinical utility of GS results, in using GS results to inform difficult decisions and in clinical protections for privacy or handling of GS results. Further efforts to improve the trustworthiness of clinical GS are needed to engage family support in implementation of GS to clinical care.
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2020
April 2020 List
Char D
Child
conference abstract
Confidentiality
consumer
Controlled Study
Deuitch N
Family Attitudes
family planning
Gal D
genetic discrimination
Grounded Theory
Health Care System
heart center
Heart Diseases -- Mortality
Human
Human Tissue
Insurance
interrater reliability
Journal Of Investigative Medicine
Magnus D
Perception
Privacy
Prognosis
Resource Allocation
Semi Structured Interview
sequence analysis
Surgery
Tang R
Transplantation
Trust
Uncertainty