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Members of the public in the USA, UK, Canada and Australia expressing genetic exceptionalism say they are more willing to donate genomic data

Public acceptance is critical for sharing of genomic data at scale. This paper examines how acceptance of data sharing pertains to the perceived similarities and differences between DNA and other forms of personal data. It explores the perceptions of representative publics from the USA, Canada, the...

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Autores principales: Middleton, Anna, Milne, Richard, Howard, Heidi, Niemiec, Emilia, Robarts, Lauren, Critchley, Christine, Nicol, Dianne, Prainsack, Barbara, Atutornu, Jerome, Vears, Danya F., Smith, James, Steed, Claire, Bevan, Paul, Scott, Erick R., Bobe, Jason, Goodhand, Peter, Kleiderman, Erika, Thorogood, Adrian, Morley, Katherine I.
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Springer International Publishing 2019
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7080803/
https://www.ncbi.nlm.nih.gov/pubmed/31784701
http://dx.doi.org/10.1038/s41431-019-0550-y
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author Middleton, Anna
Milne, Richard
Howard, Heidi
Niemiec, Emilia
Robarts, Lauren
Critchley, Christine
Nicol, Dianne
Prainsack, Barbara
Atutornu, Jerome
Vears, Danya F.
Smith, James
Steed, Claire
Bevan, Paul
Scott, Erick R.
Bobe, Jason
Goodhand, Peter
Kleiderman, Erika
Thorogood, Adrian
Morley, Katherine I.
author_facet Middleton, Anna
Milne, Richard
Howard, Heidi
Niemiec, Emilia
Robarts, Lauren
Critchley, Christine
Nicol, Dianne
Prainsack, Barbara
Atutornu, Jerome
Vears, Danya F.
Smith, James
Steed, Claire
Bevan, Paul
Scott, Erick R.
Bobe, Jason
Goodhand, Peter
Kleiderman, Erika
Thorogood, Adrian
Morley, Katherine I.
author_sort Middleton, Anna
collection PubMed
description Public acceptance is critical for sharing of genomic data at scale. This paper examines how acceptance of data sharing pertains to the perceived similarities and differences between DNA and other forms of personal data. It explores the perceptions of representative publics from the USA, Canada, the UK and Australia (n = 8967) towards the donation of DNA and health data. Fifty-two percent of this public held ‘exceptionalist’ views about genetics (i.e., believed DNA is different or ‘special’ compared to other types of medical information). This group was more likely to be familiar with or have had personal experience with genomics and to perceive DNA information as having personal as well as clinical and scientific value. Those with personal experience with genetics and genetic exceptionalist views were nearly six times more likely to be willing to donate their anonymous DNA and medical information for research than other respondents. Perceived harms from re-identification did not appear to dissuade publics from being willing to participate in research. The interplay between exceptionalist views about genetics and the personal, scientific and clinical value attributed to data would be a valuable focus for future research.
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spelling pubmed-70808032020-03-19 Members of the public in the USA, UK, Canada and Australia expressing genetic exceptionalism say they are more willing to donate genomic data Middleton, Anna Milne, Richard Howard, Heidi Niemiec, Emilia Robarts, Lauren Critchley, Christine Nicol, Dianne Prainsack, Barbara Atutornu, Jerome Vears, Danya F. Smith, James Steed, Claire Bevan, Paul Scott, Erick R. Bobe, Jason Goodhand, Peter Kleiderman, Erika Thorogood, Adrian Morley, Katherine I. Eur J Hum Genet Article Public acceptance is critical for sharing of genomic data at scale. This paper examines how acceptance of data sharing pertains to the perceived similarities and differences between DNA and other forms of personal data. It explores the perceptions of representative publics from the USA, Canada, the UK and Australia (n = 8967) towards the donation of DNA and health data. Fifty-two percent of this public held ‘exceptionalist’ views about genetics (i.e., believed DNA is different or ‘special’ compared to other types of medical information). This group was more likely to be familiar with or have had personal experience with genomics and to perceive DNA information as having personal as well as clinical and scientific value. Those with personal experience with genetics and genetic exceptionalist views were nearly six times more likely to be willing to donate their anonymous DNA and medical information for research than other respondents. Perceived harms from re-identification did not appear to dissuade publics from being willing to participate in research. The interplay between exceptionalist views about genetics and the personal, scientific and clinical value attributed to data would be a valuable focus for future research. Springer International Publishing 2019-11-29 2020-04 /pmc/articles/PMC7080803/ /pubmed/31784701 http://dx.doi.org/10.1038/s41431-019-0550-y Text en © The Author(s) 2019 Open Access 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/.
spellingShingle Article
Middleton, Anna
Milne, Richard
Howard, Heidi
Niemiec, Emilia
Robarts, Lauren
Critchley, Christine
Nicol, Dianne
Prainsack, Barbara
Atutornu, Jerome
Vears, Danya F.
Smith, James
Steed, Claire
Bevan, Paul
Scott, Erick R.
Bobe, Jason
Goodhand, Peter
Kleiderman, Erika
Thorogood, Adrian
Morley, Katherine I.
Members of the public in the USA, UK, Canada and Australia expressing genetic exceptionalism say they are more willing to donate genomic data
title Members of the public in the USA, UK, Canada and Australia expressing genetic exceptionalism say they are more willing to donate genomic data
title_full Members of the public in the USA, UK, Canada and Australia expressing genetic exceptionalism say they are more willing to donate genomic data
title_fullStr Members of the public in the USA, UK, Canada and Australia expressing genetic exceptionalism say they are more willing to donate genomic data
title_full_unstemmed Members of the public in the USA, UK, Canada and Australia expressing genetic exceptionalism say they are more willing to donate genomic data
title_short Members of the public in the USA, UK, Canada and Australia expressing genetic exceptionalism say they are more willing to donate genomic data
title_sort members of the public in the usa, uk, canada and australia expressing genetic exceptionalism say they are more willing to donate genomic data
topic Article
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7080803/
https://www.ncbi.nlm.nih.gov/pubmed/31784701
http://dx.doi.org/10.1038/s41431-019-0550-y
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