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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 and Costa, Alessia , et al. (2021) In Genome Medicine 13(1).
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... (More)

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.

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organization
publishing date
type
Contribution to journal
publication status
published
subject
in
Genome Medicine
volume
13
issue
1
article number
92
publisher
BioMed Central (BMC)
external identifiers
  • pmid:34034801
  • scopus:85106873537
ISSN
1756-994X
DOI
10.1186/s13073-021-00903-0
language
English
LU publication?
yes
additional info
Funding Information: This work was supported by Wellcome Trust grant [206194] to Society and Ethics Research, Connecting Science, Wellcome Genome Campus.
id
81507016-89c1-4ab4-bbd2-8e6934f14c29
date added to LUP
2021-06-10 12:15:11
date last changed
2024-04-20 08:19:48
@article{81507016-89c1-4ab4-bbd2-8e6934f14c29,
  abstract     = {{<p>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.</p>}},
  author       = {{Milne, Richard and Morley, Katherine I. and Almarri, Mohamed A. and Anwer, Shamim and Atutornu, Jerome and Baranova, Elena E. and Bevan, Paul and Cerezo, Maria and Cong, Yali and Costa, Alessia and Critchley, Christine and Fernow, Josepine and Goodhand, Peter and Hasan, Qurratulain and Hibino, Aiko and Houeland, Gry and Howard, Heidi C. and Hussain, S. Zakir and Malmgren, Charlotta Ingvoldstad and Izhevskaya, Vera L. and Jędrzejak, Aleksandra and Jinhong, Cao and Kimura, Megumi and Kleiderman, Erika and Leach, Brandi and Liu, Keying and Mascalzoni, Deborah and Mendes, Álvaro and Minari, Jusaku and Nicol, Dianne and Niemiec, Emilia and Patch, Christine and Pollard, Jack and Prainsack, Barbara and Rivière, Marie and Robarts, Lauren and Roberts, Jonathan and Romano, Virginia and Sheerah, Haytham A. and Smith, James and Soulier, Alexandra and Steed, Claire and Stefànsdóttir, Vigdis and Tandre, Cornelia and Thorogood, Adrian and Voigt, Torsten H. and Wang, Nan and West, Anne V. and Yoshizawa, Go and Middleton, Anna}},
  issn         = {{1756-994X}},
  language     = {{eng}},
  month        = {{12}},
  number       = {{1}},
  publisher    = {{BioMed Central (BMC)}},
  series       = {{Genome Medicine}},
  title        = {{Demonstrating trustworthiness when collecting and sharing genomic data : public views across 22 countries}},
  url          = {{http://dx.doi.org/10.1186/s13073-021-00903-0}},
  doi          = {{10.1186/s13073-021-00903-0}},
  volume       = {{13}},
  year         = {{2021}},
}