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Genet Med. 2019 Jun 13. doi: 10.1038/s41436-019-0565-3. [Epub ahead of print]

Psychological outcomes related to exome and genome sequencing result disclosure: a meta-analysis of seven Clinical Sequencing Exploratory Research (CSER) Consortium studies.

Author information

1
Center for Medical Ethics and Health Policy, Baylor College of Medicine, Houston, TX, USA.
2
Department of Pediatrics, Columbia University Medical Center, New York, NY, USA.
3
RTI, International D.C. Office, Washington, DC, USA.
4
Medical Genomics and Metabolic Genetics Branch, National Human Genome Research Institute, Bethesda, MD, USA.
5
Division of Translational Medicine and Human Genetics, Perelman School of Medicine at the University of Pennsylvania, Philadelphia, PA, USA.
6
Department of Pediatrics, University of Louisville School of Medicine, Louisville, KY, USA.
7
Department of Medicine, Columbia University Medical Center, New York, NY, USA.
8
Department of Medicine, Brigham and Women's Hospital and Harvard Medical School, Boston, MA, USA.
9
Broad Institute of MIT, Cambridge, MA, USA.
10
Department of Biomedical Data Science, Stanford University, Stanford, CA, USA.
11
Department of Health Behavior, University of North Carolina, Chapel Hill, NC, USA.
12
Department of Health Services, University of Washington, Seattle, WA, USA.
13
John Theurer Cancer Center, Hackensack University Medical Center, Hackensack, NJ, USA.
14
Georgetown University School of Medicine, Washington, DC, USA.
15
Clinical Sequencing Exploratory Research Coordinating Center, University of Washington, Seattle, WA, USA.
16
Department of Pharmacy, University of Washington, Seattle, WA, USA.
17
Corrona, LLC, Waltham, MA, USA.
18
Department of Population Science, City of Hope, Duarte, CA, USA. stagray@coh.org.
19
Department of Medical Oncology & Therapeutics Research, City of Hope, Duarte, CA, USA. stagray@coh.org.

Abstract

PURPOSE:

As exome and genome sequencing (ES/GS) enters the clinic, there is an urgent need to understand the psychological effects of test result disclosure. Through a Clinical Sequencing Exploratory Research (CSER), phase 1 (CSER1) Consortium collaboration, we evaluated participants' psychological outcomes across multiple clinical settings.

METHODS:

We conducted a random effects meta-analysis of state anxiety (Hospital Anxiety and Depression Scale [HADS]/Generalized Anxiety Disorder 7-item), depressive symptoms (HADS/Personal Health Questionnaire 9-item), and multidimensional impact (i.e., test-related distress, uncertainty and positive impact: modified Multidimensional Impact of Cancer Risk Assessment/Feelings About Genomic Testing Results scale).

RESULTS:

Anxiety and depression did not increase significantly following test result disclosure. Meta-analyses examining mean differences from pre- to postdisclosure revealed an overall trend for a decrease in participants' anxiety. We observed low levels of test-related distress and perceptions of uncertainty in some populations (e.g., pediatric patients) and a wide range of positive responses.

CONCLUSION:

Our findings across multiple clinical settings suggest no clinically significant psychological harms from the return of ES/GS results. Some populations may experience low levels of test-related distress or greater positive psychological effects. Future research should further investigate the reasons for test-related psychological response variation.

KEYWORDS:

exome sequencing; genome sequencing; patient-reported outcomes; psychological effect; return of results

PMID:
31189963
DOI:
10.1038/s41436-019-0565-3

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