Projects per year
Introduction: Direct-To-Consumer Genetic Testing (DTC-GT) is increasingly marketed to UK consumers, but the transparency of vendors' sales messages or terms and conditions (T&C) is unclear. We analysed information on vendors’ websites to assess compliance with Human Genetics Commission recommendations (2010), and sentiments evoked amongst potential consumers. Methods: Companies advertising in the UK were identified through web searches. Accessible T&C and privacy policies, including data re-use, were assessed against HGC benchmarks. Sentiments evoked by the marketing messages were examined through social media consultation. Results: After excluding genealogy and paternity services, 14 companies remained, of which 10 were registered in the UK and subject to UK DataProtection laws. These tested nutri-genetics/lifestyle traits (13/14), pre-symptomatic disease (6/14), drug responsiveness (4/14) and carrier status(2/14). The scientific rationale for gene selection was absent in 9 and only 4 clearly stated all genes to be analysed.Four companies shared both aggregated and individual-level genetic data for unspecified research. Only 2 offered a separate opt-in for researchusing individual-level data.Two companies included pre-test counselling and two post-test counselling (as an upgrade). In the T&C, all companies stated information was nonmedicaland did not guarantee quality. Marketing sentiments emphasised performance optimisation, self-improvement, knowledge enhancement, scientific altruism, and personalised medicine.Conclusions: Most DTC-GT companies marketing to UK customers are UK registered. Most have lengthy, legalistic T&Cs that consumers are likely toskip. Few HGC recommendations have been adopted. We provide suggestions for increasing transparency, and mechanisms to support oversight of marketing and T&C.
|Publication status||Published - 20 May 2016|
Should Individuals Share Their Genomic Profiles? Researchers and patient advocates wrestle with privacy and ethical concernsTibbetts, J. & Pagliari, C., Sep 2018, In: BioScience. 68, 9
Research output: Contribution to journal › Comment/debate
Transparency of genetic testing services for 'health, wellness and lifestyle': analysis of online pre-purchase information for UK consumersHall, J., Gertz, R., Amato, J. & Pagliari, C., 3 May 2017, In: European Journal of Human Genetics.
Research output: Contribution to journal › Article › peer-reviewOpen AccessFile