The legacy of language: What we say, and what people hear, when we talk about genomics.


Journal

HGG advances
ISSN: 2666-2477
Titre abrégé: HGG Adv
Pays: United States
ID NLM: 101772885

Informations de publication

Date de publication:
12 Oct 2023
Historique:
received: 05 06 2023
accepted: 07 08 2023
medline: 1 11 2023
pubmed: 23 10 2023
entrez: 23 10 2023
Statut: epublish

Résumé

The way we "talk" about genetics plays a vital role in whether public audiences feel at ease in having conversations about it. Our research explored whether there was any difference between "what we say" and "what people hear" when providing information about genetics to community groups who are known to be missing from genomics datasets. We conducted 16 focus groups with 100 members of the British public who had limited familiarity with genomics and self-identified as belonging to communities with Black African, Black Caribbean, and Pakistani ancestry as well as people of various ancestral heritage who came from disadvantaged socio-economic backgrounds. Participants were presented with spoken messages explaining genomics and their responses to these were analyzed. Results indicated that starting conversations that framed genomics through its potential benefits were met with cynicism and skepticism. Participants cited historical and present injustices as reasons for this as well as mistrust of private companies and the government. Instead, more productive conversations led with an acknowledgment that some people have questions-and valid concerns-about genomics, before introducing any of the details about the science. To diversify genomic datasets, we need to linguistically meet public audiences

Identifiants

pubmed: 37869565
doi: 10.1016/j.xhgg.2023.100231
pii: S2666-2477(23)00063-5
pmc: PMC10589723
doi:

Types de publication

Journal Article

Langues

eng

Sous-ensembles de citation

IM

Pagination

100231

Informations de copyright

© 2023 The Author(s).

Déclaration de conflit d'intérêts

The authors declare no competing interests.

Références

Eur J Med Genet. 2019 May;62(5):316-323
pubmed: 30476628
Wellcome Open Res. 2021 Nov 15;6:311
pubmed: 35592835
Sci Educ. 2014 Nov;98(6):981-1008
pubmed: 25574059
Am J Hum Genet. 2020 Oct 1;107(4):743-752
pubmed: 32946764
Annu Rev Genomics Hum Genet. 2016 Aug 31;17:395-417
pubmed: 26979405
Genet Med. 2015 Dec;17(12):949-57
pubmed: 25764215
Am J Hum Genet. 2023 Mar 2;110(3):377-395
pubmed: 36868197
J Med Ethics. 2006 Jun;32(6):346-50
pubmed: 16731734
BMJ Glob Health. 2019 Dec 19;4(6):e001932
pubmed: 31908869
J South Hist. 1982 Aug;48(3):331-48
pubmed: 11645888
BMJ. 2011 Aug 16;343:d5268
pubmed: 21846712
Nat Med. 2022 Feb;28(2):243-250
pubmed: 35145307
N Engl J Med. 2005 Apr 21;352(16):1633-6
pubmed: 15843665
Lancet Reg Health Eur. 2022 Mar 14;15:100347
pubmed: 35309760
J Genet Couns. 2020 Apr;29(2):282-292
pubmed: 32250032
Nature. 2020 Oct;586(7831):683-692
pubmed: 33116284
BMJ. 2006 May 27;332(7552):1233
pubmed: 16735322
BMJ. 2015 Nov 13;351:h6149
pubmed: 26567006
Hastings Cent Rep. 1978 Dec;8(6):21-9
pubmed: 721302
Cell. 2019 May 2;177(4):1080
pubmed: 31051100
Int J Equity Health. 2020 Oct 27;19(1):189
pubmed: 33109197
Public Underst Sci. 2018 Oct;27(7):772-786
pubmed: 29316863
Qual Health Res. 2020 Apr;30(5):783-792
pubmed: 31830860
Orphanet J Rare Dis. 2021 Apr 28;16(1):189
pubmed: 33910590
Glob Public Health. 2022 Jun;17(6):1099-1112
pubmed: 33843472

Auteurs

Anna Middleton (A)

Wellcome Connecting Science, Wellcome Genome Campus, Hinxton, Cambridgeshire CB10 1SA, UK.
Kavli Centre for Ethics, Science and the Public, Faculty of Education, University of Cambridge, 184 Hills Road, Cambridge CB4 8PQ, UK.

Alessia Costa (A)

Wellcome Connecting Science, Wellcome Genome Campus, Hinxton, Cambridgeshire CB10 1SA, UK.

Richard Milne (R)

Wellcome Connecting Science, Wellcome Genome Campus, Hinxton, Cambridgeshire CB10 1SA, UK.
Kavli Centre for Ethics, Science and the Public, Faculty of Education, University of Cambridge, 184 Hills Road, Cambridge CB4 8PQ, UK.

Christine Patch (C)

Wellcome Connecting Science, Wellcome Genome Campus, Hinxton, Cambridgeshire CB10 1SA, UK.

Lauren Robarts (L)

Wellcome Connecting Science, Wellcome Genome Campus, Hinxton, Cambridgeshire CB10 1SA, UK.

Ben Tomlin (B)

Wellcome Connecting Science, Wellcome Genome Campus, Hinxton, Cambridgeshire CB10 1SA, UK.

Mark Danson (M)

Wellcome Connecting Science, Wellcome Genome Campus, Hinxton, Cambridgeshire CB10 1SA, UK.

Sasha Henriques (S)

Wellcome Connecting Science, Wellcome Genome Campus, Hinxton, Cambridgeshire CB10 1SA, UK.
Kavli Centre for Ethics, Science and the Public, Faculty of Education, University of Cambridge, 184 Hills Road, Cambridge CB4 8PQ, UK.

Jerome Atutornu (J)

Wellcome Connecting Science, Wellcome Genome Campus, Hinxton, Cambridgeshire CB10 1SA, UK.
Kavli Centre for Ethics, Science and the Public, Faculty of Education, University of Cambridge, 184 Hills Road, Cambridge CB4 8PQ, UK.

Ugbaad Aidid (U)

Wellcome Connecting Science, Wellcome Genome Campus, Hinxton, Cambridgeshire CB10 1SA, UK.
Kavli Centre for Ethics, Science and the Public, Faculty of Education, University of Cambridge, 184 Hills Road, Cambridge CB4 8PQ, UK.

Daniela Boraschi (D)

Kavli Centre for Ethics, Science and the Public, Faculty of Education, University of Cambridge, 184 Hills Road, Cambridge CB4 8PQ, UK.

Catherine Galloway (C)

Kavli Centre for Ethics, Science and the Public, Faculty of Education, University of Cambridge, 184 Hills Road, Cambridge CB4 8PQ, UK.

Keith Yazmir (K)

Maslansky and Partners, 200 Varick Street, Suite 601, New York, NY 10014, USA.

Sachi Pettit (S)

Maslansky and Partners, 200 Varick Street, Suite 601, New York, NY 10014, USA.

Tegan Harcourt (T)

Maslansky and Partners, 200 Varick Street, Suite 601, New York, NY 10014, USA.

Alannah Connolly (A)

Maslansky and Partners, 200 Varick Street, Suite 601, New York, NY 10014, USA.

Amanda Li (A)

Maslansky and Partners, 200 Varick Street, Suite 601, New York, NY 10014, USA.

Jacob Cala (J)

Maslansky and Partners, 200 Varick Street, Suite 601, New York, NY 10014, USA.

Shelby Lake (S)

Maslansky and Partners, 200 Varick Street, Suite 601, New York, NY 10014, USA.

Julian Borra (J)

The Thin Air Factory Ltd, 71-75 Shelton Street, London WC2H 9JQ, UK.

Vivienne Parry (V)

Genomics England, Queen Mary University of London, Dawson Hall, London EC1M 6BQ, UK.

Articles similaires

[Redispensing of expensive oral anticancer medicines: a practical application].

Lisanne N van Merendonk, Kübra Akgöl, Bastiaan Nuijen
1.00
Humans Antineoplastic Agents Administration, Oral Drug Costs Counterfeit Drugs

Smoking Cessation and Incident Cardiovascular Disease.

Jun Hwan Cho, Seung Yong Shin, Hoseob Kim et al.
1.00
Humans Male Smoking Cessation Cardiovascular Diseases Female
Humans United States Aged Cross-Sectional Studies Medicare Part C
1.00
Humans Yoga Low Back Pain Female Male

Classifications MeSH