Journal article
Views of rare disease participants in a UK whole-genome sequencing study towards secondary findings: a qualitative study
- Abstract:
-
With large-scale genome sequencing initiatives underway, vast amounts of genomic data are being generated. Results—including secondary findings (SF)—are being returned, although policies around generation and management remain inconsistent. In order to inform relevant policy, it is essential that the views of stakeholders be considered—including participants who have made decisions about SF since the wider debate began. We conducted semi-structured interviews with sixteen rare disease pat...
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- Publication status:
- Published
- Peer review status:
- Peer reviewed
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Authors
Funding
Department of Health
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National Institute for Health Research
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National Institute for Health Research Biomedical Research Centre Programme
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Rhodes Trust
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Bibliographic Details
- Publisher:
- Nature Publishing Group Publisher's website
- Journal:
- European Journal of Human Genetics Journal website
- Volume:
- 26
- Pages:
- 652-659
- Publication date:
- 2018-02-13
- Acceptance date:
- 2018-01-11
- DOI:
- EISSN:
-
1476-5438
- ISSN:
-
1018-4813
Item Description
- Keywords:
- Pubs id:
-
pubs:817455
- UUID:
-
uuid:52e77d50-4b60-46fe-bc40-fd3f2fe6d70d
- Local pid:
- pubs:817455
- Source identifiers:
-
817455
- Deposit date:
- 2018-01-11
Terms of use
- Copyright holder:
- Mackley et al
- Copyright date:
- 2018
- Notes:
- This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as 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. The images or other third party material in this article are included in the article's Creative Commons license, unless indicated otherwise in a credit line to the material. If material is not included in the article's Creative Commons license and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this license, visit http://creativecommons. org/licenses/by/4.0/
- Licence:
- CC Attribution (CC BY)
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