Public reactions to direct-to-consumer genetic health tests: A comparison across the US, UK, Japan and Australia

Charbonneau, Jan; Nicol, Dianne; Chalmers, Don; Kato, Kazuto; Yamamoto, Nobuto; Walshe, Jarrod; Critchley, Christine

doi:10.1038/s41431-019-0529-8

Cited by 10 publications

(10 citation statements)

References 29 publications

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“…However, over recent years, the FDA has allowed the marketing of tests that provide genetic risk information for certain conditions (ten different kinds of diseases) [ 2 ]. At present, the vast majority of the available literature concerning DTC-GT refers to the US context and largely reflects the perspective of people who have never purchased a DTC-GT [ 4 , 5 ], or early adopters comprising well-educated people within the scientific community (engineers, biologists, health, and technology experts) who are knowledgeable about techno-scientific innovations [ 6 – 8 ]. In the last 10 years, genetic tests, which are marketed directly to the community, have made their appearance worldwide, spreading to several countries and cultures and also establishing themselves among European users—who are largely different from the US “early adopters” in terms of scientific literacy and background [ 9 ].…”

Section: Introductionmentioning

confidence: 99%

What people really change after genetic testing (GT) performed in private labs: results from an Italian study

et al. 2021

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Despite the widespread diffusion of direct-to-consumer genetic testing (GT), it is still unclear whether people who learn about their genetic susceptibility to a clinical condition change their behaviors, and the psychological factors involved. The aim of the present study is to investigate long-term changes in health-related choices, individual tendencies and risk attitudes in an Italian sample of GT users. In the context of the Mind the Risk study, which investigated a sample of Italian adults who underwent GT in a private laboratory, 99 clients participated in the follow up assessment. They completed a self-administered questionnaire investigating: (a) clinical history and motivation for testing, (b) lifestyle and risk behaviors, (c) individual tendencies toward health, and (d) risk-taking attitude and risk tolerance. Such variables were measured at three different time-points: T0—before GT, T1—at 6 months after genetic results, and T2—at 1 year from results. Results showed that, at baseline, participants who stated they intended to modify their behavior after GT results, effectively did so over time. This result held both for participants who received a positive or negative test result. In general, a healthier diet was the most frequently observed long-term behavioral change. As regards psychological variables, a risk-taking attitude and risk tolerance did not seem to affect the decision to change the lifestyle. Finally, we found an overall reduction in anxiety and worry over health over time, but also a reduction in the motivation for health promotion and prevention, health esteem, and positive expectations for their health in the future.

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Section: Introductionmentioning

confidence: 99%

What people really change after genetic testing (GT) performed in private labs: results from an Italian study

et al. 2021

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“…A similar context and tendency seem to characterize other European populations, such as in Greece ( 13 , 14 ), the Netherlands ( 15 ), Germany ( 16 ), or Switzerland ( 17 ). Most of the articles available in the literature concerning DTC-GT consumers are focused on countries outside the European Union (the US in particular) and investigated perspectives in laypeople or highly educated groups of graduate students who had never purchased a DTC-GT ( 18 , 19 ). Few studies reported outcomes on actual consumers in Europe.…”

Section: Introductionmentioning

confidence: 99%

Genetic Testing Consumers in Italy: A Preliminary Investigation of the Socio-Demographic Profile, Health-Related Habits, and Decision Purposes

Oliveri

Marton

Vergani

et al. 2020

Front. Public Health

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Aim of the study: Genetic testing is becoming increasingly common in clinical practice and health management; nonetheless, little is known about how the population approaches genetic services through private companies. Our study aims to describe socio-demographic aspects, health-related habits, and overall beliefs and knowledge about genetic risk and testing in a population of Italian citizens who decided to undergo a genetic examination through a private genetic company. Study design: A sample of 152 clients from an Italian private genetic company completed an ad-hoc survey from September 2016 to February 2018, addressing socio-demographic data, health habits, psycho-physic condition, perceived utility of genetic results, decision purposes about data sharing, and behavioral changes after results. Results: Participants (mean age 42.4) were predominantly female (82.2%) and were overall well-educated. Their main source of information were physicians (77%), and 41.1% entrusted the management of results to the same. Thirty-eight percentage underwent genetic analysis for cancer predisposition, 31.3% for fertility problems, 24% for dietary or intolerance issues in the period of enrolment. More than half of them (62.7%) reported a family history of the disease, and overall 69% had a current or past experience with a disease. Clients perceived the genetic screening as useful to adopt behaviors that may prevent disease onset (37.7%), to know their “real health status” (27.4%), and to adopt health-related behaviors (23.3%). 62.8% claimed they were motivated to change behaviors after results (healthier diet, practice exercise, medical checks), and they wanted to share results with their physician and family members. Discussion/Conclusion: The overview of consumers' profiles in Italy and other European countries can contribute to tailoring and regulating genetic services in a way that could be efficient in terms of healthy choices, behaviors, and health resource expenditures for the general public.

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“…The number of companies providing direct-to-consumer tests is growing around the world [ 43 , 110 , 111 ]. Tests for home blood collection and lab based-immunological tests (i.e., antibody tests), home-based saliva sampling for infection and genomic testing are marketed to consumers online or in stores [ 43 , 112 , 113 , 114 , 115 ].…”

Section: Resultsmentioning

confidence: 99%

COVID-19 Impact on Diagnostic Innovations: Emerging Trends and Implications

et al. 2021

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Diagnostic testing remains the backbone of the coronavirus disease 2019 (COVID-19) response, supporting containment efforts to mitigate the outbreak. The severity of this crisis and increasing capacity issues associated with polymerase chain reaction (PCR)-based testing, accelerated the development of diagnostic solutions to meet demands for mass testing. The National Institute for Health Research (NIHR) Innovation Observatory is the national horizon scanning organization in England. Since March, the Innovation Observatory has applied advanced horizon scanning methodologies and tools to compile a diagnostic landscape, based upon data captured for molecular (MDx) and immunological (IDx) based diagnostics (commercialized/in development), for the diagnosis of SARS-CoV-2. In total we identified and tracked 1608 diagnostics, produced by 1045 developers across 54 countries. Our dataset shows the speed and scale in which diagnostics were produced and provides insights into key periods of development and shifts in trends between MDx and IDx solutions as the pandemic progressed. Stakeholders worldwide required timely and detailed intelligence to respond to major challenges, including testing capacity and regulatory issues. Our intelligence assisted UK stakeholders with assessing priorities and mitigation options throughout the pandemic. Here we present the global evolution of diagnostic innovations devised to meet changing needs, their regulation and trends across geographical regions, providing invaluable insights into the complexity of the COVID-19 phenomena.

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Public reactions to direct-to-consumer genetic health tests: A comparison across the US, UK, Japan and Australia

Cited by 10 publications

References 29 publications

What people really change after genetic testing (GT) performed in private labs: results from an Italian study

What people really change after genetic testing (GT) performed in private labs: results from an Italian study

Genetic Testing Consumers in Italy: A Preliminary Investigation of the Socio-Demographic Profile, Health-Related Habits, and Decision Purposes

COVID-19 Impact on Diagnostic Innovations: Emerging Trends and Implications

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