Q: If you were given all of your raw genomic data from a research study, what would you do with this? (n=6944) |
A: "I would seek out an interpretation of it" 62% (n=4320) | A: "I would do nothing with it" 20% (n=1358) | (Missing data 18% (n=1266)) |
Participants could let us know how they would seek out an interpretation by ticking the options below (more than one box could be ticked for this answer) | Participants could let us know more about their answer by ticking one of the options below |
60% said "I'd analyse it myself" (n=2581) (Within the different professional groups, these are the percentages who would analyse the data themselves: 81% genomic researchers, 68% genetic health professionals, 56% other health professionals, 56% public) 57% said "I would ask for a referral to my local clinical genetics service" (n=2459) 43% said "I would ask my GP or Primary Care Physician" (n=1844) 41% said "would find a genomics researcher and ask them" (n=1775) 15% said "I would pay a commercial genetics company to analyse the data" (n=658) 5% had other suggestions: eg, "use google", "I would ask my bioinformatician colleagues", "I would share it on GitHub", "ask a genetic counsellor", "I would open source it to anyone online", "I would refer the raw data in a zip file to a company like 23andMe", "I would want information about interpreting the data before deciding how to proceed" (n=237)
| 78% said "I wouldn't do anything immediately with it, but would keep for future use" (n=926) 16% said "I wouldn't know what to do with it" (n=194) 3% said "I would delete the data" (n=40) 3% ticked "other" (n=32), eg, "frame it", "create some art work", "I would keep it as an amazing memento—me in print", "cool to have as a talking point", "I want to make a tattoo out of some of my DNA sequence", "print out a section and frame it, its me, much more interesting than a photo", "I wouldn't care enough to do anything with it", "I feel seeking out an interpretation aside from what the research lab could tell me would be a thankless task", "I would probably not request to have the raw data, but I would like the OPTION of requesting it" (166 participants provided no answer and thus are not included in the percentages above)
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