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. 2020 May 3;33(5):947–953. doi: 10.1093/eurpub/ckz246

Table 2.

Main findings from the six studies included in the systematic review

Study Year Population Data collection method Main findings
Schaper et al.33 2018 43 German laypeople Qualitative approach with seven focus groups, asking for:

  • attitudes, perceptions and assumed ethical implications toward DTC-GT

 Knowledge:

  • participants were unfamiliar with DTC-GTBehavior:

  • in each focus group, a participant had performed DTC-GTAttitudes:

  • critical toward health-related and predictive DTC-GT

  • supportive of lifestyle DTC-GT

  • reserved regarding commercial provision of DTC-GT

  • opposed the legal restrictions on commercial distribution of GT
Giraldi et al.28 2016 179 medical students from Italy A self-administered anonymous questionnaire asking for:

  • demographic characteristics

  • awareness and experience of DTC-GT (dichotomous yes/no questions);

  • interest in undergoing or not DTC-GT (multiple-choice questions)

  • the willingness to make the data available for research (dichotomous yes/no questions)

  • the willingness to know the results of the test (dichotomous yes/no questions)

  • the institutions they would support participating in a genetic study via DTC-GT (multiple-choice questions)

  • opinion on DTC-GT after filling out the questionnaire

 Knowledge:45.3% were aware of DTC-GTBehavior:

  • none of the respondents has ever performed a DTC-GTAttitudes:73% would undergo DTC-GT, of which 88% would make data available for research and 92% would like to know the test resultsReasons for the interest in undergoing DTC-GT:

  • knowing the risk of certain diseases (86.4%)

  • knowing the risk of passing disease predisposition onto the children (60.6%)

  • knowing the personal characteristics (52.3%)

  • knowing the sensitivity to certain medication (49.2%)

  • contributing genetic data to scientific research (47.7%)27% refrain from undergoing DTC-GT (n = 47)
Reasons for not undergoing DTC-GT:

  • concerns about the test validity (48.9%)

  • concerns that the results might cause worry (42.6%)

  • disinterest (27.7%)

  • concerns about the data privacy (19.1%)

Mählmann et al.30 2016 151 Swiss older adults An anonymized voluntary self-completion survey with 31 multiple-choice and 7-point Likert scale questions, asking for:

  • demographic variables

  • awareness about personal genomics services, motivation for testing and concerns about genomic results

  • attitudes toward research participation in genomic research studies

  • attitudes toward sharing genomic data in genomic research studies

 Knowledge:One-third of the respondents were aware of DTC-GT
Behavior:

  • 0.6% had previously performed a DTC-GTAttitudes:

  • 56% were interested in undergoing DTC-GT

Reasons for the interest in undergoing DTC-GT:

  • knowing the risk of certain disease (70.2%)

  • contributing the data to scientific research (63.1%)

  • knowing the sensitivity to certain medication (57.1%)

  • knowing the genetic ancestry (54.8%)

  • knowing the risk of disease predisposition onto the children (53.6%)

  • knowing personal genetic traits (42.9%)44% participants were not interested in undergoing DTC-GT

Reasons for not undergoing DTC-GT:

  • concerns that the results might cause worry (45.5%)

  • concerns about the test validity (42.4%)

  • disinterest/lack of utility (42.4%)

  • concerns about the data privacy (27.3%)

Oliveri et al.29 2016 145 subjects with at least bachelor degree from Italy Online survey asking for:

  • demographic variables

  • health orientation scale

  • knowledge and attitudes toward DTC-GT

  1. level of perceived knowledge about genetic risk, genetic testing and DTC-GT (Likert scale or yes/no questions)

  2. sources of information (open question)

  3. motivation for accepting or refusing DTC-GT, possible impact on current and/or future health behaviors and decisions (closed questions)

  4. intentions to undergo the DTC-GT (motivation levels on an 0–10 scale)

 Knowledge:

  • 33% were aware of DTC-GTBehavior:

  • Not reported
Attitudes:Reasons for the interest in undergoing DTC-GT:

  • knowing current health status (14.4%)

  • adopting health behaviors (15.2%)

  • increasing early detection of the disease (21.4%)

Reasons for not undergoing DTC-GT:

  • concerns about the reliability of the results (24.2%)

  • concerns that the results might cause worry and impact future behaviors (17.2%)

Stewart et al.32 2018 836 online panel members, representative of the Dutch adult, based on age, gender and education level. Online survey, sent by mail, asking for:

  • demographic variables (including a brief introduction on DTC-GT)

  • awareness of DTC-GT for disease-related purposes (dichotomous yes/no questions)

  • previous use of DTC-GT for disease-related purposes

  • acceptability of the DTC-GT (Likert 5-point scale, 1—completely unacceptable to 5—completely acceptable)

  • consideration to undergo DTC-GT for disease-related purposes at some time in the future (5-point scale: 1—certainly no to 5—certainly yes)

  • intention to undergo DTC-GT for disease-related purposes in the next year

(5-point scale :1—certainly no to 5—certainly yes)		 Knowledge:

  • 28.5% were aware of DTC-GT for disease-related purposes

  • Behavior:

  • 0.2% had previously performed a DTC-GT for disease-related purposesAttitudes:

  • 12.6% considered undergoing DTC-GT for disease relatedpurposes in the distant future

  • 5.5% intended to undergo DTC-GT for disease-related purposes in the coming year
Mavroidopoulou et al.31 2015 725 undergraduate postgraduate and doctoral students from Greece Printed and online survey asking for:

  • demographic variables (including a brief introduction on DTC-GT)

  • 24 closed-ended questions (Likert, dichotomous and buying propensity questions):

  1. 11 questions on awareness, interest and reasons to take/refuse DTC-GT

  2. 13 questions after introducing hypothetical scenario to assess understanding of the DTC-GT results and their impact on psychology and future actions

 Knowledge:

  • 30.1% were aware of DTC-GT (39% healthcare/biomedical sciences students; 24% non-biomedical)
Behavior:

  • 3.4% had previously performed a DTC-GT

Attitudes:

  • 61.3% would agree to take the test after a briefing

  • 54.9% interested in DTC-GT for a serious disease (cancer or CVD) and 76% of them would consult their doctor before

  • 50.2% interested in a DTC-GT for metabolism or genealogy

  • 9.7% would order a DTC-GT if it costs 500€, 51.6% if the test is free

Reasons for the interest in undergoing DTC-GT:

  • learning about their health (>60%)

  • warning their children (>60%)

  • their doctor can monitor their health (>60%)

  • changing lifestyle (>60%)

Reasons for not undergoing DTC-GT:

  • knowing the risk of certain disease (55.7%)

  • concerns about the data privacy (47.8%)

  • concerns about the reliability of the results (46.9%)

  • concerns about the utility of the test (27.7%)

DTC-GT, direct-to-consumer genetic testing; CVD, cardiovascular disease.