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Demonstrating trustworthiness when collecting and sharing genomic data: public views across 22 countries

BACKGROUND: Public trust is central to the collection of genomic and health data and the sustainability of genomic research. To merit trust, those involved in collecting and sharing data need to demonstrate they are trustworthy. However, it is unclear what measures are most likely to demonstrate thi...

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Autores principales: Milne, Richard, Morley, Katherine I., Almarri, Mohamed A., Anwer, Shamim, Atutornu, Jerome, Baranova, Elena E., Bevan, Paul, Cerezo, Maria, Cong, Yali, Costa, Alessia, Critchley, Christine, Fernow, Josepine, Goodhand, Peter, Hasan, Qurratulain, Hibino, Aiko, Houeland, Gry, Howard, Heidi C., Hussain, S. Zakir, Malmgren, Charlotta Ingvoldstad, Izhevskaya, Vera L., Jędrzejak, Aleksandra, Jinhong, Cao, Kimura, Megumi, Kleiderman, Erika, Leach, Brandi, Liu, Keying, Mascalzoni, Deborah, Mendes, Álvaro, Minari, Jusaku, Nicol, Dianne, Niemiec, Emilia, Patch, Christine, Pollard, Jack, Prainsack, Barbara, Rivière, Marie, Robarts, Lauren, Roberts, Jonathan, Romano, Virginia, Sheerah, Haytham A., Smith, James, Soulier, Alexandra, Steed, Claire, Stefànsdóttir, Vigdis, Tandre, Cornelia, Thorogood, Adrian, Voigt, Torsten H., Wang, Nan, West, Anne V., Yoshizawa, Go, Middleton, Anna
Formato: Online Artículo Texto
Lenguaje:English
Publicado: BioMed Central 2021
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8147072/
https://www.ncbi.nlm.nih.gov/pubmed/34034801
http://dx.doi.org/10.1186/s13073-021-00903-0
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author Milne, Richard
Morley, Katherine I.
Almarri, Mohamed A.
Anwer, Shamim
Atutornu, Jerome
Baranova, Elena E.
Bevan, Paul
Cerezo, Maria
Cong, Yali
Costa, Alessia
Critchley, Christine
Fernow, Josepine
Goodhand, Peter
Hasan, Qurratulain
Hibino, Aiko
Houeland, Gry
Howard, Heidi C.
Hussain, S. Zakir
Malmgren, Charlotta Ingvoldstad
Izhevskaya, Vera L.
Jędrzejak, Aleksandra
Jinhong, Cao
Kimura, Megumi
Kleiderman, Erika
Leach, Brandi
Liu, Keying
Mascalzoni, Deborah
Mendes, Álvaro
Minari, Jusaku
Nicol, Dianne
Niemiec, Emilia
Patch, Christine
Pollard, Jack
Prainsack, Barbara
Rivière, Marie
Robarts, Lauren
Roberts, Jonathan
Romano, Virginia
Sheerah, Haytham A.
Smith, James
Soulier, Alexandra
Steed, Claire
Stefànsdóttir, Vigdis
Tandre, Cornelia
Thorogood, Adrian
Voigt, Torsten H.
Wang, Nan
West, Anne V.
Yoshizawa, Go
Middleton, Anna
author_facet Milne, Richard
Morley, Katherine I.
Almarri, Mohamed A.
Anwer, Shamim
Atutornu, Jerome
Baranova, Elena E.
Bevan, Paul
Cerezo, Maria
Cong, Yali
Costa, Alessia
Critchley, Christine
Fernow, Josepine
Goodhand, Peter
Hasan, Qurratulain
Hibino, Aiko
Houeland, Gry
Howard, Heidi C.
Hussain, S. Zakir
Malmgren, Charlotta Ingvoldstad
Izhevskaya, Vera L.
Jędrzejak, Aleksandra
Jinhong, Cao
Kimura, Megumi
Kleiderman, Erika
Leach, Brandi
Liu, Keying
Mascalzoni, Deborah
Mendes, Álvaro
Minari, Jusaku
Nicol, Dianne
Niemiec, Emilia
Patch, Christine
Pollard, Jack
Prainsack, Barbara
Rivière, Marie
Robarts, Lauren
Roberts, Jonathan
Romano, Virginia
Sheerah, Haytham A.
Smith, James
Soulier, Alexandra
Steed, Claire
Stefànsdóttir, Vigdis
Tandre, Cornelia
Thorogood, Adrian
Voigt, Torsten H.
Wang, Nan
West, Anne V.
Yoshizawa, Go
Middleton, Anna
author_sort Milne, Richard
collection PubMed
description BACKGROUND: Public trust is central to the collection of genomic and health data and the sustainability of genomic research. To merit trust, those involved in collecting and sharing data need to demonstrate they are trustworthy. However, it is unclear what measures are most likely to demonstrate this. METHODS: We analyse the ‘Your DNA, Your Say’ online survey of public perspectives on genomic data sharing including responses from 36,268 individuals across 22 low-, middle- and high-income countries, gathered in 15 languages. We examine how participants perceived the relative value of measures to demonstrate the trustworthiness of those using donated DNA and/or medical information. We examine between-country variation and present a consolidated ranking of measures. RESULTS: Providing transparent information about who will benefit from data access was the most important measure to increase trust, endorsed by more than 50% of participants across 20 of 22 countries. It was followed by the option to withdraw data and transparency about who is using data and why. Variation was found for the importance of measures, notably information about sanctions for misuse of data—endorsed by 5% in India but almost 60% in Japan. A clustering analysis suggests alignment between some countries in the assessment of specific measures, such as the UK and Canada, Spain and Mexico and Portugal and Brazil. China and Russia are less closely aligned with other countries in terms of the value of the measures presented. CONCLUSIONS: Our findings highlight the importance of transparency about data use and about the goals and potential benefits associated with data sharing, including to whom such benefits accrue. They show that members of the public value knowing what benefits accrue from the use of data. The study highlights the importance of locally sensitive measures to increase trust as genomic data sharing continues globally. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1186/s13073-021-00903-0.
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spelling pubmed-81470722021-05-25 Demonstrating trustworthiness when collecting and sharing genomic data: public views across 22 countries Milne, Richard Morley, Katherine I. Almarri, Mohamed A. Anwer, Shamim Atutornu, Jerome Baranova, Elena E. Bevan, Paul Cerezo, Maria Cong, Yali Costa, Alessia Critchley, Christine Fernow, Josepine Goodhand, Peter Hasan, Qurratulain Hibino, Aiko Houeland, Gry Howard, Heidi C. Hussain, S. Zakir Malmgren, Charlotta Ingvoldstad Izhevskaya, Vera L. Jędrzejak, Aleksandra Jinhong, Cao Kimura, Megumi Kleiderman, Erika Leach, Brandi Liu, Keying Mascalzoni, Deborah Mendes, Álvaro Minari, Jusaku Nicol, Dianne Niemiec, Emilia Patch, Christine Pollard, Jack Prainsack, Barbara Rivière, Marie Robarts, Lauren Roberts, Jonathan Romano, Virginia Sheerah, Haytham A. Smith, James Soulier, Alexandra Steed, Claire Stefànsdóttir, Vigdis Tandre, Cornelia Thorogood, Adrian Voigt, Torsten H. Wang, Nan West, Anne V. Yoshizawa, Go Middleton, Anna Genome Med Research BACKGROUND: Public trust is central to the collection of genomic and health data and the sustainability of genomic research. To merit trust, those involved in collecting and sharing data need to demonstrate they are trustworthy. However, it is unclear what measures are most likely to demonstrate this. METHODS: We analyse the ‘Your DNA, Your Say’ online survey of public perspectives on genomic data sharing including responses from 36,268 individuals across 22 low-, middle- and high-income countries, gathered in 15 languages. We examine how participants perceived the relative value of measures to demonstrate the trustworthiness of those using donated DNA and/or medical information. We examine between-country variation and present a consolidated ranking of measures. RESULTS: Providing transparent information about who will benefit from data access was the most important measure to increase trust, endorsed by more than 50% of participants across 20 of 22 countries. It was followed by the option to withdraw data and transparency about who is using data and why. Variation was found for the importance of measures, notably information about sanctions for misuse of data—endorsed by 5% in India but almost 60% in Japan. A clustering analysis suggests alignment between some countries in the assessment of specific measures, such as the UK and Canada, Spain and Mexico and Portugal and Brazil. China and Russia are less closely aligned with other countries in terms of the value of the measures presented. CONCLUSIONS: Our findings highlight the importance of transparency about data use and about the goals and potential benefits associated with data sharing, including to whom such benefits accrue. They show that members of the public value knowing what benefits accrue from the use of data. The study highlights the importance of locally sensitive measures to increase trust as genomic data sharing continues globally. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1186/s13073-021-00903-0. BioMed Central 2021-05-25 /pmc/articles/PMC8147072/ /pubmed/34034801 http://dx.doi.org/10.1186/s13073-021-00903-0 Text en © The Author(s) 2021 https://creativecommons.org/licenses/by/4.0/Open AccessThis 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 licence, and indicate if changes were made. The images or other third party material in this article are included in the article's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article's Creative Commons licence 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 licence, visit http://creativecommons.org/licenses/by/4.0/ (https://creativecommons.org/licenses/by/4.0/) . The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/ (https://creativecommons.org/publicdomain/zero/1.0/) ) applies to the data made available in this article, unless otherwise stated in a credit line to the data.
spellingShingle Research
Milne, Richard
Morley, Katherine I.
Almarri, Mohamed A.
Anwer, Shamim
Atutornu, Jerome
Baranova, Elena E.
Bevan, Paul
Cerezo, Maria
Cong, Yali
Costa, Alessia
Critchley, Christine
Fernow, Josepine
Goodhand, Peter
Hasan, Qurratulain
Hibino, Aiko
Houeland, Gry
Howard, Heidi C.
Hussain, S. Zakir
Malmgren, Charlotta Ingvoldstad
Izhevskaya, Vera L.
Jędrzejak, Aleksandra
Jinhong, Cao
Kimura, Megumi
Kleiderman, Erika
Leach, Brandi
Liu, Keying
Mascalzoni, Deborah
Mendes, Álvaro
Minari, Jusaku
Nicol, Dianne
Niemiec, Emilia
Patch, Christine
Pollard, Jack
Prainsack, Barbara
Rivière, Marie
Robarts, Lauren
Roberts, Jonathan
Romano, Virginia
Sheerah, Haytham A.
Smith, James
Soulier, Alexandra
Steed, Claire
Stefànsdóttir, Vigdis
Tandre, Cornelia
Thorogood, Adrian
Voigt, Torsten H.
Wang, Nan
West, Anne V.
Yoshizawa, Go
Middleton, Anna
Demonstrating trustworthiness when collecting and sharing genomic data: public views across 22 countries
title Demonstrating trustworthiness when collecting and sharing genomic data: public views across 22 countries
title_full Demonstrating trustworthiness when collecting and sharing genomic data: public views across 22 countries
title_fullStr Demonstrating trustworthiness when collecting and sharing genomic data: public views across 22 countries
title_full_unstemmed Demonstrating trustworthiness when collecting and sharing genomic data: public views across 22 countries
title_short Demonstrating trustworthiness when collecting and sharing genomic data: public views across 22 countries
title_sort demonstrating trustworthiness when collecting and sharing genomic data: public views across 22 countries
topic Research
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8147072/
https://www.ncbi.nlm.nih.gov/pubmed/34034801
http://dx.doi.org/10.1186/s13073-021-00903-0
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