Table 2. Attitudes towards receiving genomic data: adjusteda results.
Question | Public | Genetic health profs | Non-genetic health profs | Genomic researchers | Total N |
---|---|---|---|---|---|
Should pertinent findings from genome studies be made available to research participants? | Ref. 1 | 2.78b (1.43–5.42) | 1.99 (0.98–4.08) | 1.81 (0.98–3.37) | 4691 |
0=Research participants should be able to choose to receive pertinent findings, if they want them; 1=I don't think pertinent findings from research projects should be available; Don't know responses not included in analysis | P=0.003 | P=0.06 | P=0.06 | ||
Should incidental findings from genome studies be made available to research participants? | Ref. 1 | 5.86 (4.14–8.29) | 2.72 (1.83–4.04) | 1.52 (1.01–2.29) | 4618 |
0=Research participants should be able to choose to receive incidental findings, if they want them; 1=I don't think pertinent findings from research projects should be available; Don't know responses not included in analysis | P<0.0001 | P<0.0001 | P=0.04 | ||
Let's imagine you are a research participant. If you had the choice to receive information in the following categories, what would you want to know? ‘I'd like to know about...' …conditions that are life threatening and cannot be prevented 0=Yes, 1=no, don't know responses not included in the analysis | Ref. 1 | 3.84 (2.95–5.01) P<0.0001 | 2.02 (1.54–2.65) P<0.0001 | 0.92 (0.71–1.20) P=0.55 | 4151 |
…conditions that are life threatening and can be prevented | Ref. 1 | 1.76 (0.71–4.35) | 1.12 (0.42–2.99) | 1.35 (0.54–3.38) | 4176 |
P=0.22 | P=0.82 | P=0.52 | |||
…conditions that are serious (but not life threatening) and cannot be prevented | Ref. 1 | 5.65 (4.30–7.42) | 2.10 (1.57–2.81) | 1.28 (0.98–1.67) | 4309 |
P<0.0001 | P<0.0001 | P=0.07 | |||
…conditions that are serious (but not life threatening) and can be prevented | Ref. 1 | 2.33 (1.05–5.14) | 1.31 (0.52–3.27) | 2.30 (1.11–4.76) | 4703 |
P=0.04 | P=0.57 | P=0.03 | |||
‘If I was a research participant, I'd like to receive information that...' …demonstrates how I might respond to different medications or drugs (eg, statins, anti-depressants etc) | Ref. 1 | 2.10 (1.26–3.49) P=0.005 | 0.77 (0.39–1.53) P=0.46 | 1.50 (0.93–2.43) P=0.10 | 4627 |
0=Yes, 1=no, don't know responses not included in the analysis | |||||
.. tells me if I'm a carrier of a condition that could be relevant to my children | Ref. 1 | 2.54 (1.55–4.18) | 1.08 (0.59–2.00) | 0.76 (0.41–1.42) | 4645 |
P<0.0001 | P=0.81 | P=0.39 | |||
.. is not immediately relevant but could be useful later in life (eg, relating to a very late onset cancer or predisposition to strokes) | Ref. 1 | 3.67 (2.63–5.13) P<0.0001 | 1.86 (1.28–2.70) P=0.001 | 1.36 (0.96–1.93) P=0.08 | 4468 |
.. is uncertain and cannot be interpreted at the moment | Ref. 1 | 1.98 (1.52–2.56) | 1.12 (0.89–1.42) | 0.95 (0.77–1.16) | 4068 |
P<0.0001 | P=0.33 | P=0.60 | |||
... is not likely to be of serious health importance (eg, mild eyesight problems) | Ref. 1 | 3.67 (2.86–4.71) | 1.06 (0.82–1.36) | 1.10 (0.89–1.36) | 4533 |
P<0.0001 | P=0.67 | P=0.36 | |||
.. tells me about my ancestry | Ref. 1 | 4.29 (3.26–5.64) | 1.18 (0.84–1.66) | 1.77 (1.36–2.31) | 4572 |
P<0.0001 | P=0.33 | P<0.0001 | |||
Let's assume it is possible to return incidental findings relating a condition that is serious and preventable. Does the level of risk of actually getting the condition affect whether you think the result should be returned? ‘If I was a research participant, I'd like to receive information that predicts...' there is a 1 in 100 risk (ie, 1% chance) that this condition will occur 0=Yes, 1=no, don't know responses not included in the analysis | Ref. 1 | 1.34 (1.04–1.72) P=0.02 | 0.81 (0.63–1.05) P=0.11 | 0.68 (0.54–0.85) P=0.001 | 4282 |
... there is a 10 in 100 risk (ie, 10% chance) that this condition will occur | Ref. 1 | 1.28 (0.93–1.75) | 1.21 (0.89–1.64) | 0.83 (0.62–1.10) | 4389 |
P=0.14 | P=0.23 | P=0.20 | |||
... there is a 50 in 100 risk (ie, 50% chance) that this condition will occur | Ref. 1 | 0.99 (0.51–1.94) | 1.48 (0.84–2.60) | 0.91 (0.51–1.61) | 4635 |
P=0.98 | P=0.18 | P=0.74 | |||
... there is a 90 in 100 risk (ie, 90% chance) that this condition will occur | Ref. 1 | 0.60 (0.18–2.02) | 1.95 (0.93–4.09) | 1.31 (0.63–2.73) | 4673 |
P=0.41 | P=0.08 | P=0.47 | |||
Assuming research participants consent, do you think genomic researchers should actively search for incidental findings that are not relevant to the research study? | Ref. 1 | 3.09 (2.23–4.28) P<0.0001 | 1.50 (1.15–1.95) P=0.003 | 1.55 (1.22–1.95) P<0.0001 | 3944 |
0=Yes, 1=no, don't know responses not included in the analysis |
Adjusting for: gender, age, geography, education, ethnicity, religiosity, marital status, parent or not, recruitment method, previous genetic testing/genomic analysis.
Odds ratios with 95% confidence intervals in brackets.