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Various concerns related to privacy and consent regarding data generated by direct- to-consumer genomic tests...

Recommendation
Various concerns related to privacy and consent regarding data generated by direct- to-consumer genomic tests were raised during this inquiry. Many of these were similar to concerns that have been expressed regarding personal data more generally, although the relevance of an individual’s genomic data to that individual’s relatives was raised as a particular feature of genomic data. Despite data protection legislation and voluntary agreements such as the Code on Genetic Testing and Insurance, the complexity and uncertainty of future uses of genomic data may challenge current procedures for obtaining informed consent. Further, consumers may not benefit from this data protection if they transfer their data or genetic samples out of the UK for processing. As technologies develop and more consumers use direct-to- consumer genomic tests, existing data safeguards may become less effective and the consequences for privacy more significant. The Government should aim for the data protection framework governing genomic data in the UK to be world-leading. It should review the adequacy of the UK’s data protection framework for direct-to-consumer genomic testing, including the risks and opportunities presented by technological developments and growing numbers of consumers using direct-to-consumer genomic tests. The Government should aim for the data protection framework governing genomic data in the UK to be world-leading. It should review the adequacy of the UK’s data protection framework for direct-to-consumer genomic testing, including the risks and opportunities presented by technological developments and growing numbers of consumers using direct-to-consumer genomic tests. The Government should also consider the case for requiring companies providing direct-to-consumer genomic tests to inform consumers, at the point of sale, of the potential consequences of genomic test results for their relatives.
Paragraph Reference
88
Government Response

A response document is linked to this report, dated 1 November 2021. Response attribution to this recommendation has not been verified. Read the response document.

Addressee Bodies
Department for Science, Innovation and Technology
Timeline
Recommendation age 5.2 yrs
Report published 22 Jun 2021