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 |
