Abstract
While direct to consumer health-related genetic testing (DTCGT) has potential to provide accessible genetic information and empower individuals to make informed healthcare decisions, it attracts concern associated with regulatory gaps, clinical utility and potential for harm. Understanding public reactions to DTCGT is vital to facilitate considered regulatory, health care and consumer protection strategies. Yet little is known, particularly outside the dominant US market, about how the general public view and might engage with DTCGT outside traditional health care systems. This paper addresses this knowledge gap with the first empirical study to investigate general public views across four countries, each at different stages of market development. US (n = 1000), UK (n = 1014), Japanese (n = 1018) and Australian (n = 1000) respondents completed an online experimental survey assessing comprehension, risk perceptions, and potential psychological and behavioural outcomes by type of test (disease pre-disposition and drug sensitivity), severity, lifestyle factors, and family history. Results showed generally low awareness and intention to purchase across countries, highest in the US and lowest in Japan. Results also showed clear preference for within-country purchases (less in Japan), with reports returned via doctors far more important in Japan. All respondents were more likely to act on test results, where there was higher genetic or lifestyle risk of developing a disease. Statistical comparisons of demographic and health-related variables across countries point to the need for further analyses designed to explain much needed cross-cultural, cross-health care system and developed versus developing market differences.
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Acknowledgements
Experimental design, survey development and Australia and US data collection were completed as part of JC’s PhD, supervised equally by DN, CC and DC. JC collected UK and Japanese data on behalf of the Centre for Law & Genetics and Osaka University respectively. CC and JC prepared the initial draft with all authors contributing to the final article. JW programmed the survey and contributed to specific data preparation, analysis and literature review for this article. NY and KK contributed to survey translation. This research was funded by the Australian Research Council Discovery Grant Personalised Medicine in the Age of Genomic Medicine DP11010069 (AU/US); Centre for Law & Genetics, UTAS Strategic Grant (UK); Graduate School of Medicine, Osaka University (Japan); and Swinburne University (survey assistance). We would like to thank all survey respondents for their time and considered input.
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Charbonneau, J., Nicol, D., Chalmers, D. et al. Public reactions to direct-to-consumer genetic health tests: A comparison across the US, UK, Japan and Australia. Eur J Hum Genet 28, 339–348 (2020). https://doi.org/10.1038/s41431-019-0529-8
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DOI: https://doi.org/10.1038/s41431-019-0529-8
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