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. 2015 Apr 29;24(1):21–29. doi: 10.1038/ejhg.2015.58

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          
a

Adjusting for: gender, age, geography, education, ethnicity, religiosity, marital status, parent or not, recruitment method, previous genetic testing/genomic analysis.

b

Odds ratios with 95% confidence intervals in brackets.