Journal article
Old challenges or new issues? Genetic health professionals’ experiences obtaining informed consent in diagnostic genomic sequencing
- Abstract:
- Background While integrating genomic sequencing into clinical care carries clear medical benefits, it also raises difficult ethical questions. Compared to traditional sequencing technologies, genomic sequencing and analysis is more likely to identify unsolicited findings (UF) and variants that cannot be classified as benign or disease-causing (variants of uncertain significance; VUS). UF and VUS pose new challenges for genetic health professionals (GHPs) who are obtaining informed consent for genomic sequencing from patients. Methods We conducted semi-structured interviews with 31 GHPs across Europe, Australia and Canada to identify some of these challenges. Results Our results show that GHPs find it difficult to prepare patients to receive results because a vast amount of information is required to fully inform patients about VUS and UF. GHPs also struggle to engage patients – many of whom may be focused on ending their ‘diagnostic odyssey’ – in the informed consent process in a meaningful way. Thus, some questioned how ‘informed’ patients actually are when they agree to undergo clinical genomic sequencing. Conclusions These findings suggest a tension remains between sufficient information provision at the risk of overwhelming the patient and imparting less information at the risk of uninformed decision-making. We suggest that a shift away from ‘fully informed consent’ toward an approach aimed at realizing, as far as possible, the underlying goals that informed consent is meant to promote.
- Publication status:
- Published
- Peer review status:
- Peer reviewed
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(Preview, Version of record, 1.4MB, Terms of use)
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- Publisher copy:
- 10.1080/23294515.2020.1823906
Authors
+ Uehiro Foundation on Ethics and Education
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- Funder identifier:
- http://dx.doi.org/10.13039/100016355
- Publisher:
- Taylor & Francis
- Journal:
- AJOB Empirical Bioethics More from this journal
- Volume:
- 12
- Issue:
- 1
- Pages:
- 12-23
- Publication date:
- 2020-10-05
- Acceptance date:
- 2020-07-29
- DOI:
- EISSN:
-
2150-7724
- ISSN:
-
2150-7716
- Language:
-
English
- Keywords:
- Pubs id:
-
1124913
- Local pid:
-
pubs:1124913
- Deposit date:
-
2020-08-10
Terms of use
- Copyright holder:
- Vears et al.
- Copyright date:
- 2020
- Rights statement:
- © 2020 The Author(s). Published with license by Taylor & Francis Group, LLC. This is an Open Access article distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.
- Licence:
- CC Attribution (CC BY)
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