Table 1.

Questions of the MAIN-A and MAIN-C surveys

Q1A/C: My attitude towards the future is positive (trusting) although there would be significant uncertainty associated with the things important for me going well. (1) My attitude is very trusting (2) My attitude is somewhat trusting (3) My attitude is neither positive or negative (4) My attitude is somewhat negative (5) My attitude is very negative

Q2A/C: I believe that genetic information improves my quality of life regardless of the nature of information. (1) Yes (2) No (.) Cannot say

Q3A/C: I believe that genetic information improves the quality of life of my close ones regardless of the nature of information. (1) Yes (2) No (.) Cannot say

Q4A/C: Obtaining test results on inheritable risk factors related to my own (Q4C: my child’s) health would be important regardless of the content of the test results. (1) Yes (2) No (.) Cannot say

Q5A/C: Knowledge that according to the test I have (Q5C: my child has) genetic risk factors would cause me concern. (3) Would cause very much concern (2) Would cause some concern (1) Would not cause any concern (.) Cannot say

Q6A/C: Knowledge that according to the test I have (Q6C: my child has) genetic risk factors would influence my decisions related to my work and other issues concerning my personal finances. (3) Would have large influence (2) Would have some influence (1) Would not have any influence (.) Cannot say

Q7A: Would you like to hear about such secondary findings concerning your health, which increase the probability of some other heritable illness? Let us assume in this case that this illness IS treatable if such illness later occurs. (1) I would like to know about this secondary finding (3) I would not like to know about this secondary finding (2) Secondary finding would make no difference for me

Q7C: Do you think it would be reasonable that people could obtain information about disease risk factors related to inheritable conditions as a part of the general healthcare? (1) Yes, everybody should be able to obtain information if they wish so (2) Yes, but information should be given only to those who physician thinks the information would be useful (3) No, this information should not be given as a part of general healthcare (.) Cannot say

Q8A: Would you like to hear about such secondary findings concerning your health, which increase the probability of some other heritable illness? Let us assume in this case that this illness IS NOT treatable if such illness later occurs. (1) I would like to know about this secondary finding (3) I would not like to know about this secondary finding (2) Secondary finding would make no difference for me

Q8C: Do you think that information on genotype can be used for medical research if identity is concealed? (1) Yes (2) No (.) Cannot say

Q9A: Do you think it would be reasonable that people could obtain information about disease risk factors related to inheritable conditions as a part of the general healthcare? (1) Yes, everybody should be able to obtain information if they wish so (2) Yes, but information should be given only to those who physician thinks the information would be useful (3) No, this information should not be given as a part of general healthcare (.) Cannot say

Q9C: Do you think that information on genotype can be used for other purpose than medical research (e.g. research on kinship and historical and societal research) if identity is concealed? (1) Yes (2) No (.) Cannot say

Q10A: Do you think that information on genotype can be used for medical research if identity is concealed? (1) Yes (2) No (.) Cannot say

Q10C: Given my own financial situation, I would be willing to make a significant monetary investment on genetic testing to find out the nature of my/my children’s disease. (1) Yes (2) No (.) Cannot say

Q11A: Do you think that information on genotype can be used for other purpose than medical research (e.g. research on kinship and historical and societal research) if identity is concealed? (1) Yes (2) No (.) Cannot say

Q11C: If I had the following two options, I would like that: (1) Test results are provided fast (some weeks) but the results are less comprehensive (2) Test results are comprehensive but obtaining them takes more time

Q12A: Given my own financial situation, I would be willing to make a significant monetary investment on genetic testing to find out the nature of my/my children’s disease. (1) Yes (2) No (.) Cannot say

Q12C: If I had the following three options, I would like that: (1) I tell about the results to my close relatives myself (2) I tell about the results to my close relatives with the help of my doctor (3) The results would not be told to close relatives

Q13A: If I had the following two options, I would like that: (1) Test results are provided fast (some weeks) but the results are less comprehensive (2) Test results are comprehensive but obtaining them takes more time

Q13C: Should my close relatives be offered a chance to check their own genotype for risk factors if my own test results indicate the possibility of heritable disease? (1) Should be directly offered the chance (2) Should be offered the chance from their separate request (3) Should not be offered this chance at all

Q14A: If I had the following three options, I would like that: (1) I tell about the results to my close relatives myself (2) I tell about the results to my close relatives with the help of my doctor (3) The results would not be told to close relatives

Q15A: Should my close relatives be offered a chance to check their own genotype for risk factors if my own test results indicate the possibility of heritable disease? (1) Should be directly offered the chance (2) Should be offered the chance from their separate request (3) Should not be offered this chance at all