Table 1

What participants said they would do with their raw sequence data

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)