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

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Milne, R, Morley, KI, Almarri, MA, Anwer, S, Atutornu, J, Baranova, EE, Bevan, P, Cerezo, M, Cong, Y, Costa, A, Critchley, C, Fernow, J, Goodhand, P, Hasan, Q, Hibino, A, Houeland, G, Howard, HC, Hussain, SZ, Malmgren, CI, Izhevskaya, VL, JA Jedrzejak, A, Jinhong, C, Kimura, M, Kleiderman, E, Leach, B, Liu, K, Mascalzoni, D, Mendes, A, Minari, J, Nicol, D ORCID: 0000-0002-6553-2839, Niemiec, E, Patch, C, Pollard, J, Prainsack, B, Riviere, M, Robarts, L, Roberts, J, Romano, V, Sheerah, HA, Smith, J, Soulier, A, Steed, C, Stefansdottir, V, Tandre, C, Thorogood, A, Voigt, TH, Wang, N, West, AV, Yoshizawa, G and Middleton, A 2021 , 'Demonstrating trustworthiness when collecting and sharing genomic data: public views across 22 countries' , Genome Medicine, vol. 13, no. 1 , pp. 1-12 , doi: 10.1186/s13073-021-00903-0.

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Abstract

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.

Item Type: Article
Authors/Creators:Milne, R and Morley, KI and Almarri, MA and Anwer, S and Atutornu, J and Baranova, EE and Bevan, P and Cerezo, M and Cong, Y and Costa, A and Critchley, C and Fernow, J and Goodhand, P and Hasan, Q and Hibino, A and Houeland, G and Howard, HC and Hussain, SZ and Malmgren, CI and Izhevskaya, VL and JA Jedrzejak, A and Jinhong, C and Kimura, M and Kleiderman, E and Leach, B and Liu, K and Mascalzoni, D and Mendes, A and Minari, J and Nicol, D and Niemiec, E and Patch, C and Pollard, J and Prainsack, B and Riviere, M and Robarts, L and Roberts, J and Romano, V and Sheerah, HA and Smith, J and Soulier, A and Steed, C and Stefansdottir, V and Tandre, C and Thorogood, A and Voigt, TH and Wang, N and West, AV and Yoshizawa, G and Middleton, A
Keywords: Your DNA Your Say, trust, trustworthiness, genomic data
Journal or Publication Title: Genome Medicine
Publisher: BioMed Central Ltd.
ISSN: 1756-994X
DOI / ID Number: 10.1186/s13073-021-00903-0
Copyright Information:

© The Author(s). 2020 Open Access This article is licensed under a Creative Commons Attribution 4.0 International (CC BY 4.0) License (https://creativecommons.org/licenses/by/4.0/), 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.

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