We are delighted that our WP5 leads John McDermott and Ramona Moldovan along with colleagues have published an article in the Pharmacogenomics Journal.
DTC PGx testing is expanding rapidly in the UK, yet no dedicated regulatory framework currently governs these services. A 2021 parliamentary inquiry recommended stronger safeguards and clearer technical standards for genomic testing, but these proposals have not been applied to PGx. This study explores public attitudes toward DTC PGx testing, focusing on expectations for pre-test information, quality standards, and NHS data use.
Focus groups were heled with members of the public, both with and without prior experience of purchasing DTC PGx tests, or other online health tests. They were audio-recorded with consent, transcribed, and analysed thematically. We identified three themes: (mis)understanding towards and awareness of DTC PGx testing; altruistic motivation and equity concerns; and (mis)trust. Participants were generally enthusiastic about PGx testing, as long as issues of equity, data protection, and regulation were addressed, with data sharing concerns being particularly prominent. Read the article here: