TY - JOUR

T1 - Demonstrating trustworthiness when collecting and sharing genomic data

T2 - public views across 22 countries

AU - Milne, Richard

AU - Morley, Katherine I.

AU - Almarri, Mohamed A.

AU - Anwer, Shamim

AU - Atutornu, Jerome

AU - Baranova, Elena E.

AU - Bevan, Paul

AU - Cerezo, Maria

AU - Cong, Yali

AU - Costa, Alessia

AU - Critchley, Christine

AU - Fernow, Josepine

AU - Goodhand, Peter

AU - Hasan, Qurratulain

AU - Hibino, Aiko

AU - Houeland, Gry

AU - Howard, Heidi C.

AU - Hussain, S. Zakir

AU - Malmgren, Charlotta Ingvoldstad

AU - Izhevskaya, Vera L.

AU - Jędrzejak, Aleksandra

AU - Jinhong, Cao

AU - Kimura, Megumi

AU - Kleiderman, Erika

AU - Leach, Brandi

AU - Liu, Keying

AU - Mascalzoni, Deborah

AU - Mendes, Álvaro

AU - Minari, Jusaku

AU - Nicol, Dianne

AU - Niemiec, Emilia

AU - Patch, Christine

AU - Pollard, Jack

AU - Prainsack, Barbara

AU - Rivière, Marie

AU - Robarts, Lauren

AU - Roberts, Jonathan

AU - Romano, Virginia

AU - Sheerah, Haytham A.

AU - Smith, James

AU - Soulier, Alexandra

AU - Steed, Claire

AU - Stefànsdóttir, Vigdis

AU - Tandre, Cornelia

AU - Thorogood, Adrian

AU - Voigt, Torsten H.

AU - Wang, Nan

AU - West, Anne V.

AU - Yoshizawa, Go

AU - Middleton, Anna

N1 - Funding Information: This work was supported by Wellcome grant [206194] to Society and Ethics Research, Connecting Science, Wellcome Genome Campus. We would also like to acknowledge the input of Noémie Aubert Bonn, Universiteit Hasselt, Belgium. In memory of Professor Christine Critchley. Funding Information: This work was supported by Wellcome Trust grant [206194] to Society and Ethics Research, Connecting Science, Wellcome Genome Campus. Publisher Copyright: © 2021, The Author(s).

PY - 2021/12

Y1 - 2021/12

N2 - 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.

AB - 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.

UR - http://www.scopus.com/inward/record.url?scp=85106873537&partnerID=8YFLogxK

U2 - 10.1186/s13073-021-00903-0

DO - 10.1186/s13073-021-00903-0

M3 - Journal article

C2 - 34034801

AN - SCOPUS:85106873537

VL - 13

JO - Genome Medicine

JF - Genome Medicine

SN - 1756-994X

IS - 1

M1 - 92

ER -