Summary of participants

The survey was completed by 6500 participants. Of these, 191 had missing ethnicity data. Within the remaining 6309 participants, 1813 individuals were in the EM+ group and 4496 in Group W (Table 1). The two cohorts did not differ significantly in terms of gender, but were significantly different for marital status, religion, and the impact of religion on their beliefs (Table 2 and residuals in Table S2). Results of all questions are summarised in Appendix 1 and Table S3. The statements perceived and questions answered most differently between Group EM+ and Group W in four sections are summarised in Fig. 1.

Table 2 Characteristics of participants in the ethnic minority and white cohortsFig. 1

Statements perceived and questions answered most differently between Group EM+ and Group W in three sections of the survey. The statements perceived and questions answered most differently in the first three sections of the survey: a knowledge and familiarity with genetic testing (“I have previously undertaken a genetic test”), b actions or feelings as a result of a supposed genetic test (“If I learnt from a genetic test that I had an increased risk of developing cancer, I would worry that it would affect my chances of finding a job”), c predicted future applications of genetic testing (“In 5–10 years time, potential employees will have to do a genetic test before they are hired”) and there were no questions answered significantly differently between the two groups in “concerns or apprehensions surrounding genetic testing”. Each bar sums to 100% and the distribution of each category is shown using different colours. For (a) red = yes, light blue = unsure and dark blue = no, whereas in (b–c) light to dark red denotes agreement and light to dark blue denotes disagreement

Knowledge and familiarity with genetic testing

Respondents were asked if they had heard about genetic testing, if they had undertaken a genetic test or had been diagnosed with an inherited genetic condition. As a whole, participants were fairly familiar with genetic testing, with 69.94% of them having heard about genetic testing prior to taking this survey. Additionally, 10.09% had undertaken a genetic test and 6.86% had been diagnosed with an inherited genetic condition.

Group W tended to be more familiar with genetic testing, with about 13% more having heard about genetic testing as compared to Group EM+ (Group EM+ = 61.00%, Group W = 73.98%; p < 6.94E−4). Additionally, those in Group W were almost twice as likely to have taken a genetic test compared to Group EM+ (Group EM+ = 5.90%, Group W = 11.65%; p < 6.94E−4). This perhaps partially explained the results showing that a slightly increased proportion of white individuals had been (a) diagnosed with an inherited genetic condition (Group EM + = 6.78% Yes, 22.06% Unsure, 71.16% No ; Group W = 6.85% Yes, 14.02% Unsure, 79.13% No, p < 6.94E-4), (b) found to carry an inherited genetic abnormality linked to an increased risk of developing cancer (Group EM+ = 1.88% Yes, 25.37% Unsure, 72.75% No; Group W = 2.07% Yes, 14.46% Unsure, 83.47% No, p < 6.94E−4) and (c) been found to carry an inherited genetic abnormality that is linked to an increased risk of developing a specific disease (Group EM+ = 4.91% Yes, 25.92% Unsure, 69.17% No; Group W = 5.52% Yes, 15.24% Unsure, 79.25% No, p < 6.94E−4). The EM+ group reported having more relatives who carry an inherited genetic abnormality that has been linked with an increased risk of developing a cancer (Group EM + = 7.73% Yes, 33.75% Unsure, 58.52% No; Group W = 7.22% Yes, 26.45% Unsure, 66.33% No, p < 6.94E−4).

Actions or feelings as a result of genetic test

Respondents were asked how a genetic test might affect them, as well as how much they would trust the test results. As a whole, participants were interested in taking a genetic test to see if they had increased risk for cancer, and mostly felt that a genetic test would help them plan for the future (86.06% agreed), but they were worried how it would affect their health and/or life insurance (73.81% agreed).

Those in the EM+ group tended to showed concern around the future implications of genetic results to their livelihoods. When asked “if I learnt from a genetic test that I had an increased risk of developing cancer, I would worry that it would affect my chances of finding a job”, EM+ participants were more likely to agree (Group EM+: 48.09% agreed; Group W: 31.90% agreed, p < 6.94E−4). Perhaps this reflects a more general underlying anxiety about the use of genetic testing for minority populations. There have been a number of instances of compulsory DNA sample collection in various countries for surveillance and control programmes [17], some of these practices have been thought to be discriminatory in nature. There was no significant difference between the two groups in their concern about how a genetic test would affect their health and/or life insurance or that the statement “treatment and prevention options for cancer are limited, so learning from a genetic test that I had an increased risk of developing cancer wouldn’t help much”. However, the EM+ group were more inclined to plan for the future if they learnt that they had an increased risk of developing cancer (Group EM+: 87.98% agreed; Group W: 85.63% agreed, p < 6.94E−4). Further, there were no significant differences between Group EM+ and Group W in their concern about their own, their partner’s or their family’s emotional responses.

The two groups differed significantly when asked at what level of risk they would initiate medication to modify their risk of cancer. A lifetime risk of cancer of 30–50% in Group EM+ was selected most often for when to start a new medication (23.17% of respondents) whereas Group W most selected 50–80% (25.33% of respondents). Both groups most frequently chose a 10–30% lifetime risk of developing cancer to prompt them to make lifestyle or diet changes (Group EM+: lifestyle—24.60%, diet—25.92%; Group W: lifestyle—28.54%, diet—30.43%). Finally, 50–80% lifetime risk was most often selected by both groups to undergo preventative surgery (Group EM+: 28.13%; Group W: 31.83%).

Concerns or apprehensions surrounding genetic testing

Overall, the respondents were moderately concerned that a genetic test would change their future (57.41% agreed) and respondents were fairly undecided on the subject of not wanting to be tested for specific diseases. There was no significant difference between groups with regard to increased concern or apprehension on how a genetic test might affect their future or what diseases for which they might have shown increased risk. Of the four statements around apprehensions towards genetic tests, Group EM+ were likely to agree with all of them, but these differences were not statistically significant under Bonferroni adjustment: (a) “I do not want to know what kind of diseases I could get in the future” (Group EM+: 25.97% agreed; Group W: 23.90% agreed), (b) “The idea of a genetic test frightens me” (Group EM+: 41.20% agreed; Group W: 35.85%), (c) “I worry that having a genetic test might change my future” (Group EM+: 65.19% agreed; Group W: 54.33% agreed) and (d) “It would be too upsetting to learn from a genetic test that I have an increased risk of developing cancer, so I am happier not knowing” (Group EM+: 24.16% agreed; Group W: 20.88% agreed).

Predicted future applications of genetic testing

Participants overall were strongly in favour of increasing funding for genetic tests (94.14% agreed), making them more available (93.24% agreed) and using genetic tests in the recruitment of patients for cancer screening programmes (84.31% agreed). Additionally, respondents wanted test results to be confidential (95.96% agreed), and saw them as a positive advancement in treating disease (97.05% agreed). Participants did not have strong predictions for the future applications of genetic testing, although they did not think that test results would be used routinely in employment (82.32% disagreed with the statement “In 5–10 years time, potential employees will have to do a genetic test before they are hired”).

Participants were also asked about access to the information from genetic tests. Group W were slightly more in favour of the results remaining confidential (Group EM+: 95.36% agreed; Group W: 96.26% agreed, p < 6.94E−4). However, Group EM+ thought individuals should legally have to inform relatives about their test results (Group EM+: 43.51% agreed; Group W: 27.73% agreed, p < 6.94E−4).

The two groups were not significantly different in their opinions that (a) people should have more genetic tests, (b) they would consider having a genetic test that was available over the counter at a chemist or supermarket (without the involvement of a healthcare professional), (c) genetic tests should be used to select people for cancer screening programs and (d) their interest in finding out if a disease had been inherited (both groups overall were in markedly favour). Further, both groups were overwhelmingly supportive of increasing funding for research (Group EM+: 93.93% agreed; Group W: 94.51% agreed).

Participants were also asked about how they envisioned the uses of genetic testing changing in 5–10 years. Both groups were similarly unsure on the existence of genetic passports. However, Group EM+ were more likely to agree that (a) genetic testing would be used by employers for selecting new hires (Group EM+: 29.34% agreed, Group W: 12.83% agreed, p < 6.94E−4) and (b) genetic testing would be utilised by insurance companies setting premiums (Group EM + : 46.05% agreed; Group W: 35.92% agreed, p < 6.94E−4).

Personal understanding of biology or genetics

Out of a series of 17 questions related to biology and genetics, the responses of Group EM+ and Group W significantly differed in number of these. As a whole, the respondents tended to choose the correct answer, however, Group EM+ tended to be less confident in their answers (shown in Fig. 2).

Fig. 2

Statements perceived most differently between Group EM+ and Group W in their in their personal understanding of biology and genetics. The Likert scale chart shows marked differences between the two groups. The chart represents the items with the three lowest p-values (greatest difference between the groups). Each bar sums to 100% and the distribution of each category is shown using different colours (light to dark red denotes agreement whereas light to dark blue denotes disagreement)

Both populations had similar opinions, both overwhelmingly in favour that genes: (a) are a piece of DNA (b) part of a chromosome (c) are inside cells (d) come in pairs; one copy from each parent and (e) that a person has ~22,000 genes. Overall, this highlights a similar baseline understanding of genetics in both groups. However, Group W seemed perhaps more aware of biological nuances. For instance, the onset of certain diseases is due to a combination of genes, environment, and lifestyle (Group EM+: 93.93% agreed; Group W: 96.00% agreed, p < 6.94E−4). Given the increasing importance of genomic testing in clinical care, this illuminates an important consideration about examining the way individuals understand and communicate about genetic information. The implications of these findings are aligned with other studies suggesting that genomics-related health literacy domains (i.e. knowledge, understanding) should inform educational programmes for genomic information [18].

There was some confusion over the heritability of disease, although overall understanding was high. A larger proportion of Group EM+ agreed with the notion that all serious diseases are hereditary (Group EM+: 25.81%% agreed; Group W: 11.14% agreed, p < 6.94E-4) and were more inclined to believe that the child of an individual with a genetic disease always inherits the gene causing the disease (Group EM+: 50.47% agreed; Group W: 32.25% agreed, p < 6.94E−4). A smaller proportion of Group EM+ agreed with the statement “If I have inherited genetic abnormalities that increase my risk of cancer, this does not mean that I will definitely develop cancer” (Group EM + : 89.46% agreed; Group W: 93.26% agreed, p < 6.94E-4) and “The carrier of a disease gene may be completely healthy” (Group EM + : 92.55% agreed; Group W: 97.64% agreed, p < 6.94E-4).