Table 3.
Understanding and attitudes towards the research uses of the data.
| Categories | Themes | Example quotes |
|---|---|---|
| Understanding | Contribute to research | “they spoke to us about the consent for the pharmaceutical companies and I think that that’s good because if they’re able to find cures or advance medicine then I’m happy to do it” P02 |
| Commercial organisations accessing data | “I’m well aware you know, companies around the world, private companies, pharmaceutical companies…there’s many companies involved in how research takes place” P19 | |
| University researchers accessing data | “you know, if I was against universities looking and doing their research, because after all they get funding…to do that” P06 | |
| Data protection | “everything is kept confidential…our names are not matched to the sample” P03 | |
| Data storage | “I believe the results will be fed into some kind of central database” P06 | |
| Perceived benefits | Desire to help others with same condition | “If in ten years’ time if another child is born and the’ve got a similar thing to Jamie…you know?”P07 |
| May eventually lead to a cure for others | “If one day they can find a cure and help other children as well, it will be worth it” P17 | |
| Help others get diagnosed earlier | “let’s say another kid comes in with exactly the same display of symptoms and problems as our son, he might get an answer at the age of one or before” P19 | |
| Support NHS | “but if we can give something back to the NHS via this new, fledgling project and help you build, you know, another arm o d the NHS through this whole genome sequencing…” P14 | |
| Importance of pharmaceutical companies having access to data | “We need to have the pharmaceutical companies to be able to create the medications to try and help with these conditions.” P16 | |
| Concerns | Data protection and privacy | “So that was my major concern. You don’t want commercial people to be able to identify you. But I think they relayed all – got rid of all those concerns for us.” P18 |
| Ongoing concerns about privacy / security changes | “What happens if in 15 years’ time the rules change in the NHS or the government changes the rules, would you let us know that effectively the contract between us has changed slightly?…I remember I specifically asked ‘will you tell us if things change?’ and she said ‘no’…That’s the point where I thought, hmmm, you might need to clarify that one for the future…. [It’s like] your bank changing your terms and conditions and never telling you.” P19 | |
| Pharmaceutical companies | “I guess concern is not the right word, but…I might have paused”. P20 |