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Anticipating uncertainty and irrevocable decisions: provider perspectives on implementing whole-genome sequencing in critically ill children with heart disease.
Char, Danton S; Lee, Sandra Soo-Jin; Magnus, David; Cho, Mildred.
Afiliação
  • Char DS; Division of Pediatric Cardiac Anesthesia, Department of Anesthesiology, Stanford University School of Medicine, Stanford, California, USA. dchar@stanford.edu.
  • Lee SS; Center for Biomedical Ethics, Stanford University School of Medicine, Stanford, California, USA. dchar@stanford.edu.
  • Magnus D; Center for Biomedical Ethics, Stanford University School of Medicine, Stanford, California, USA.
  • Cho M; Center for Biomedical Ethics, Stanford University School of Medicine, Stanford, California, USA.
Genet Med ; 20(11): 1455-1461, 2018 11.
Article em En | MEDLINE | ID: mdl-29493583
ABSTRACT

PURPOSE:

To investigate the potential impacts of whole-genome sequencing (WGS) in the pediatric critical-care context, we examined how clinicians caring for critically ill children with congenital heart disease (CHD) anticipate and perceive the impact of WGS on their decision-making process and treatment recommendations.

METHODS:

We conducted semistructured in-person and telephone interviews of clinicians involved in the care of critically ill children with CHD at a high-volume pediatric heart center. We qualitatively analyzed the transcribed interviews.

RESULTS:

In total, 34 clinicians were interviewed. Three themes emerged (i) uncertainty about the accuracy of WGS testing and adequacy of testing validation; (ii) the use of WGS to facilitate life-limiting decisions such as futility, rationing, and selective prenatal termination; and (iii) moral distress over using WGS with a lack of decision support.

CONCLUSION:

Despite uncertainty about WGS testing, the interviewed clinicians were using, and anticipated expanding the use of, WGS results to justify declarations of futility, withdrawal of care, and rationing in critically ill children with CHD. This situation is causing moral distress in providers who have to make high-stakes decisions involving WGS results, with only partial understanding of them. Decision support for clinicians, and discussion with families of the risks of using WGS for rationing or withdrawal, is needed.
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Texto completo: 1 Base de dados: MEDLINE Assunto principal: Genoma Humano / Testes Genéticos / Estado Terminal / Cardiopatias Tipo de estudo: Diagnostic_studies / Guideline / Prognostic_studies / Qualitative_research Limite: Child / Female / Humans Idioma: En Ano de publicação: 2018 Tipo de documento: Article

Texto completo: 1 Base de dados: MEDLINE Assunto principal: Genoma Humano / Testes Genéticos / Estado Terminal / Cardiopatias Tipo de estudo: Diagnostic_studies / Guideline / Prognostic_studies / Qualitative_research Limite: Child / Female / Humans Idioma: En Ano de publicação: 2018 Tipo de documento: Article