Demonstrating trustworthiness when collecting and sharing genomic data: public views across 22 countries
Creators: name: Milne, Richard
name: Morley, Katherine I.
name: Almarri, Mohamed A.
name: Anwer, Shamim
name: Atutornu, Jerome
name: Baranova, Elena E.
name: Bevan, Paul
name: Cerezo, Maria
name: Cong, Yali
name: Costa, Alessia
name: Critchley, Christine
name: Fernow, Josepine
name: Goodhand, Peter
name: Hasan, Qurratulain
name: Hibino, Aiko
name: Houeland, Gry
name: Howard, Heidi C.
name: Hussain, S. Zakir
name: Malmgren, Charlotta Ingvoldstad
name: Izhevskaya, Vera L.
name: Jędrzejak, Aleksandra
name: Jinhong, Cao
name: Kimura, Megumi
name: Kleiderman, Erika
name: Leach, Brandi
name: Liu, Keying
name: Mascalzoni, Deborah
name: Mendes, Álvaro
name: Minari, Jusaku
name: Nicol, Dianne
name: Niemiec, Emilia
name: Patch, Christine
name: Pollard, Jack
name: Prainsack, Barbara
name: Rivière, Marie
name: Robarts, Lauren
name: Roberts, Jonathan
name: Romano, Virginia
name: Sheerah, Haytham A.
name: Smith, James
name: Soulier, Alexandra
name: Steed, Claire
name: Stefànsdóttir, Vigdis
name: Tandre, Cornelia
name: Thorogood, Adrian
name: Voigt, Torsten H.
name: Wang, Nan
name: West, Anne V.
name: Yoshizawa, Go
name: Middleton, Anna
Publisher: name: Apollo - University of Cambridge Repository
Year: 2021
Subjects: Research

description: 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.