Genomic data sharing in Europe is stumbling—Could a code of conduct prevent its fall?

Molnár-Gábor, Fruzsina; Korbel, Jan O.

doi:10.15252/emmm.201911421

Cited by 28 publications

(22 citation statements)

References 14 publications

(12 reference statements)

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“…4 , each often has greatest similarity with countries outside the bloc. At a European level, these findings may contribute to the exploration of national variation in the implementation of regulation and legal safeguards derived from the GDPR [ 32 ].…”

Section: Discussionmentioning

confidence: 99%

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

et al. 2021

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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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Section: Discussionmentioning

confidence: 99%

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

et al. 2021

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“…Other jurisdictions, including some in Africa, have equally moved to increase privacy protections 193 . To address concerns about the impact of data protection legislation on research, researchers globally have argued for the development of codes of conduct for the sharing of genomic data in ways that are aligned with legislated data protection principles 194 . Codes of conduct would encourage data controllers or processors such as genomic research institutes to apply data protection provisions effectively and allow them to demonstrate compliance in a way that promotes national and international transfers of data.…”

Section: Collaboration and Data Sharing In Gwasmentioning

confidence: 99%

Genome-wide association studies

Uffelmann

Huang

Munung

et al. 2021

Nat Rev Methods Primers

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“…To make this work, however, we must ensure well-curated experimental data sets are widely available and take care to assess their utility across different populations. Global efforts to securely share genetic data will help facilitate this ( 133 , 134 ).…”

Section: Conclusion and Future Challengesmentioning

confidence: 99%

Linking genome variants to disease: scalable approaches to test the functional impact of human mutations

Findlay

2021

Human Molecular Genetics

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The application of genomics to medicine has accelerated the discovery of mutations underlying disease and enhanced our knowledge of the molecular underpinnings of diverse pathologies. As the amount of human genetic material queried via sequencing has grown exponentially in recent years, so too has the number of rare variants observed. Despite progress, our ability to distinguish which rare variants have clinical significance remains limited. Over the last decade, however, powerful experimental approaches have emerged to characterise variant effects orders of magnitude faster than before. Fuelled by improved DNA synthesis and sequencing, and more recently by CRISPR/Cas9 genome editing, multiplex functional assays provide a means of generating variant effect data in wide-ranging experimental systems. Here, I review recent applications of multiplex assays that link human variants to disease phenotypes and describe emerging strategies that will enhance their clinical utility in coming years.

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Genomic data sharing in Europe is stumbling—Could a code of conduct prevent its fall?

Cited by 28 publications

References 14 publications

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

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

Genome-wide association studies

Linking genome variants to disease: scalable approaches to test the functional impact of human mutations

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