Attitudes of publics who are unwilling to donate DNA data for research.
Journal
European journal of medical genetics
ISSN: 1878-0849
Titre abrégé: Eur J Med Genet
Pays: Netherlands
ID NLM: 101247089
Informations de publication
Date de publication:
May 2019
May 2019
Historique:
received:
05
10
2018
revised:
20
11
2018
accepted:
22
11
2018
pubmed:
27
11
2018
medline:
30
8
2019
entrez:
27
11
2018
Statut:
ppublish
Résumé
With the use of genetic technology, researchers have the potential to inform medical diagnoses and treatment in actionable ways. Accurate variant interpretation is a necessary condition for the utility of genetic technology to unfold. This relies on the ability to access large genomic datasets so that comparisons can be made between variants of interest. This can only be successful if DNA and medical data are donated by large numbers of people to 'research', including clinical, non-profit and for-profit research initiatives, in order to be accessed by scientists and clinicians worldwide. The objective of the 'Your DNA, Your Say' global survey is to explore public attitudes, values and opinions towards willingness to donate and concerns regarding the donation of one's personal data for use by others. Using a representative sample of 8967 English-speaking publics from the UK, the USA, Canada and Australia, we explore the characteristics of people who are unwilling (n = 1426) to donate their DNA and medical information, together with an exploration of their reasons. Understanding this perspective is important for making sense of the interaction between science and society. It also helps to focus engagement initiatives on the issues of concern to some publics.
Identifiants
pubmed: 30476628
pii: S1769-7212(18)30731-6
doi: 10.1016/j.ejmg.2018.11.014
pmc: PMC6582635
pii:
doi:
Types de publication
Journal Article
Langues
eng
Sous-ensembles de citation
IM
Pagination
316-323Subventions
Organisme : Wellcome Trust
Pays : United Kingdom
Informations de copyright
Copyright © 2018 The Authors. Published by Elsevier Masson SAS.. All rights reserved.
Références
J Hum Genet. 2016 Apr;61(4):275-82
pubmed: 26740237
Genet Med. 2010 Aug;12(8):486-95
pubmed: 20535021
J Community Genet. 2017 Oct;8(4):275-281
pubmed: 28699077
Expert Rev Mol Diagn. 2014 Nov;14(8):1053-65
pubmed: 25260013
BMC Med Ethics. 2018 Feb 27;19(1):13
pubmed: 29482536
Per Med. 2018 Jul 1;15(4):311-318
pubmed: 29856292
Public Health Genomics. 2011;14(3):135-42
pubmed: 20938159
BMC Public Health. 2017 May 25;17(1):503
pubmed: 28545429
Lancet. 2017 Apr 22;389(10079):1603-1604
pubmed: 28443545
Genome Med. 2016 Jun 23;8(1):71
pubmed: 27338147
J Community Genet. 2017 Oct;8(4):267-273
pubmed: 28755064
Am J Hum Genet. 2017 Mar 2;100(3):414-427
pubmed: 28190457
Nat Commun. 2018 Jul 27;9(1):2957
pubmed: 30054469
Hum Genet. 2014 Jul;133(7):895-903
pubmed: 24573176
Nurs Outlook. 2013 Jul-Aug;61(4):196-204
pubmed: 23219004
Curr Cardiol Rep. 2018 Mar 8;20(4):22
pubmed: 29520520
BMC Med Inform Decis Mak. 2012 May 22;12:39
pubmed: 22616619
Eur J Hum Genet. 2014 Mar;22(3):317-21
pubmed: 23778872
J Community Genet. 2018 Apr;9(2):103-116
pubmed: 28952070
Soc Sci Med. 2009 Jun;68(12):2215-22
pubmed: 19394741
Wellcome Open Res. 2017 Feb 24;2:15
pubmed: 28317033
APMIS. 2015 Feb;123(2):169-74
pubmed: 25421942
Med Health Care Philos. 2016 Jun;19(2):177-90
pubmed: 26280642
F1000Res. 2017 Nov 17;6:2020
pubmed: 29259772
Public Health Genomics. 2014;17(1):33-42
pubmed: 24401187
J Natl Black Nurses Assoc. 2013 Jul;24(1):16-23
pubmed: 24218869
Eur J Hum Genet. 2014 Jul;22(7):866-74
pubmed: 24253862
Am J Hum Genet. 2017 May 4;100(5):695-705
pubmed: 28475856
Eur J Hum Genet. 2016 Oct;24(10):1403-8
pubmed: 27049302
Health Aff (Millwood). 2018 May;37(5):780-785
pubmed: 29733732
Community Genet. 2005;8(3):161-72
pubmed: 16113533
Nature. 2016 Oct 12;538(7624):161-164
pubmed: 27734877
J Community Genet. 2017 Oct;8(4):255-266
pubmed: 28770442
J Gen Intern Med. 2014 Aug;29 Suppl 3:S780-7
pubmed: 25029978