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Genome sequencing in healthcare: understanding the UK general public's views and implications for clinical practice

Genome sequencing in healthcare: understanding the UK general public's views and implications for clinical practice
Genome sequencing in healthcare: understanding the UK general public's views and implications for clinical practice

Technological advances have seen the offer of genome sequencing becoming part of mainstream medical practice. Research has elicited patient and health professional views on the ethical issues genome sequencing raises, however, we know little about the general public's views. These views offer an insight into people's faith in such technologies, informing discussion regarding the approach to consent in clinic. We aimed to garner public views regarding genome sequencing, incidental findings (IFs), and sharing genetic information with relatives. Participants (n = 1954) from the British general public completed a survey, distributed via email. Overall, the public had a positive view of genomic sequencing, choosing 'informative' as the most popular word (52%) and 'family legacy' as the most popular analogy (33%) representing genomic sequencing for them. Fifty-three percent agree that their relative had the right to be told about genetic information relevant to them. Fifty-four percent would expect to be told about IFs whether they had asked for them or not. Clinical practice needs to acknowledge these perspectives and expectations in order to facilitate meaningful discussion during the consent process for genomic tests. We suggest that: (a) optimistic perspectives on the usefulness of genomic tests need to be tempered by discussion in clinic about the likelihood that genomic results might be uninformative, uncertain or unexpected; (b) discussions regarding the familial nature of results are needed before testing: the majority of patients will welcome this and any concerns can be explored further; and (c) a wider discussion is required regarding the consent approach for genomic testing.

1018-4813
Ballard, Lisa M
48a7b1af-4d2b-4ec7-8927-84361a3c62a9
Horton, Rachel H
f79e8b73-2edc-47aa-b29a-1801ad10fe6b
Fenwick, Angela
95a1f4fa-7f6f-4c07-a93b-9ea39c231c31
Lucassen, Anneke M
2eb85efc-c6e8-4c3f-b963-0290f6c038a5
Ballard, Lisa M
48a7b1af-4d2b-4ec7-8927-84361a3c62a9
Horton, Rachel H
f79e8b73-2edc-47aa-b29a-1801ad10fe6b
Fenwick, Angela
95a1f4fa-7f6f-4c07-a93b-9ea39c231c31
Lucassen, Anneke M
2eb85efc-c6e8-4c3f-b963-0290f6c038a5

Ballard, Lisa M, Horton, Rachel H, Fenwick, Angela and Lucassen, Anneke M (2019) Genome sequencing in healthcare: understanding the UK general public's views and implications for clinical practice. European Journal of Human Genetics. (doi:10.1038/s41431-019-0504-4).

Record type: Article

Abstract

Technological advances have seen the offer of genome sequencing becoming part of mainstream medical practice. Research has elicited patient and health professional views on the ethical issues genome sequencing raises, however, we know little about the general public's views. These views offer an insight into people's faith in such technologies, informing discussion regarding the approach to consent in clinic. We aimed to garner public views regarding genome sequencing, incidental findings (IFs), and sharing genetic information with relatives. Participants (n = 1954) from the British general public completed a survey, distributed via email. Overall, the public had a positive view of genomic sequencing, choosing 'informative' as the most popular word (52%) and 'family legacy' as the most popular analogy (33%) representing genomic sequencing for them. Fifty-three percent agree that their relative had the right to be told about genetic information relevant to them. Fifty-four percent would expect to be told about IFs whether they had asked for them or not. Clinical practice needs to acknowledge these perspectives and expectations in order to facilitate meaningful discussion during the consent process for genomic tests. We suggest that: (a) optimistic perspectives on the usefulness of genomic tests need to be tempered by discussion in clinic about the likelihood that genomic results might be uninformative, uncertain or unexpected; (b) discussions regarding the familial nature of results are needed before testing: the majority of patients will welcome this and any concerns can be explored further; and (c) a wider discussion is required regarding the consent approach for genomic testing.

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More information

Accepted/In Press date: 22 August 2019
e-pub ahead of print date: 16 September 2019

Identifiers

Local EPrints ID: 434971
URI: http://eprints.soton.ac.uk/id/eprint/434971
ISSN: 1018-4813
PURE UUID: c6645c93-1461-4210-a932-1d8237d19636
ORCID for Anneke M Lucassen: ORCID iD orcid.org/0000-0003-3324-4338

Catalogue record

Date deposited: 17 Oct 2019 16:30
Last modified: 26 Nov 2021 07:13

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Contributors

Author: Lisa M Ballard
Author: Rachel H Horton
Author: Angela Fenwick

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