Boardman, Felicity K. and Hale, Rachel (2018) Responsibility and identity and genomic sequencing : a comparison of published recommendations and patient perspectives on accepting or declining incidental findings. Molecular Genetics and Genomic Medicine, 6 (6). pp. 1079-1096. doi:10.1002/mgg3.485

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Abstract

Background
The use of genomic sequencing techniques is increasingly being incorporated into mainstream health care. However, there is a lack of agreement on how “incidental findings” (IFs) should be managed and a dearth of research on patient perspectives.

Methods
In‐depth qualitative interviews were carried out with 31 patients undergoing genomic sequencing at a regional genetics service in England. Interviews explored decisions around IFs and were comparatively analyzed with published recommendations from the literature.

Results
Thirteen participants opted to receive all IFs from their sequence, 12 accepted some and rejected others, while six participants refused all IFs. The key areas from the literature, (a) genotype/phenotype correlation, (b) seriousness of the condition, and (c) implications for biological relatives, were all significant; however, patients drew on a broader range of social and cultural information to make their decisions.

Conclusion
This study highlights the range of costs and benefits for patients of receiving IFs from a genomic sequence. While largely positive views toward the dissemination of genomic data were reported, ambivalence surrounding genetic responsibility and its associated behaviors (e.g., duty to inform relatives) was reported by both IF decliners and accepters, suggesting a need to further explore patient perspectives on this highly complex topic area.

Item Type:	Journal Article
Subjects:	Q Science > QH Natural history
Divisions:	Faculty of Medicine > Warwick Medical School > Health Sciences Faculty of Medicine > Warwick Medical School > Health Sciences > Social Science & Systems in Health (SSSH) Faculty of Medicine > Warwick Medical School
Library of Congress Subject Headings (LCSH):	Genomics, Gene mapping
Journal or Publication Title:	Molecular Genetics and Genomic Medicine
Publisher:	Wiley
ISSN:	2324-9269
Official Date:	November 2018
Dates:	Date Event November 2018 Published 28 October 2018 Available 18 September 2018 Accepted
Date of first compliant deposit:	19 September 2018
Volume:	6
Number:	6
Page Range:	pp. 1079-1096
DOI:	10.1002/mgg3.485
Status:	Peer Reviewed
Publication Status:	Published
Access rights to Published version:	Open Access
RIOXX Funder/Project Grant:	Project/Grant ID RIOXX Funder Name Funder ID 203384/Z/16/Z Wellcome Trust http://dx.doi.org/10.13039/100010269
Related URLs:	Publisher

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