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Table 5 Accuracy-related transcripts’ quotes

From: Parental perspectives on consent for participation in large-scale, non-biological data repositories

Sub-Themes

Quotes

Consent process concerns

 Loss to follow-up

“But, the disadvantage [of project-specific consent], and I think it’s too big of a disadvantage, is that you could lose people to follow-up because you may not be able to contact them every time [that] the secondary researcher wants to use the data. And it’s time consuming. And it’s expensive to have to contact these people every time you want to use their data. So, to me I don’t think that this is a viable option for the data library and I’m sure it’s not probably the option that will be used”. [Mother, interview 19]

“Cause they could [sic] could move or it could be mailed to the wrong address or [sic], I don’t know, lots of things could happen. I think it’s better to have … their consent rather than them not saying anything is their consent”. [Mother, Interview 3]

“Because I think you can lose contact information from people. … You get a new cell phone. [sic]… You move to Toronto. [sic] I think eventually within 10 years, you probably are not going to be living in the same place or whatever”. [Mother, Focus Group 1]

 Lack of understanding

“In the sense that you guys are saying you don’t know where [the data is] going to, so to consent [broadly] … [sic], unless you know where [the data is] going to, [the consent question is] kind of a moot point I think”. [mom, Interview 13]

“Well disadvantages is that [the parent] would have to have way more knowledge about who [can] access that information of not. My goodness, could you imagine the time for that? … You would need to know more. I mean [sic], if there was a committee who could determine who could use [the data] that would be better, because they have more knowledge why this person needs the information. But from our position, from my position I’m thinking well I’d be saying yes [to share] but really without knowledge I really don’t know what I’d be saying yes to really”. [Mother, Interview 15]

“I think [sic] the disadvantage to [the tiered consent model] is … for any researchers thinking outside the box. If what they’re doing is not covered in the preferences, then the data that could be used is then not available”. [Mother, Interview 7]

“A negative part would be to make sure that everyone understands [sic] how that data is going to be managed and what the process will be to access that data, and who can access that data. If that’s clearly outlined and then if the understanding is there from all of the participants, [both] would [sic] maybe [be] more difficult or to assess”. [Mother, Interview 10]

Concerns about parents

 Consent vs. Withdrawal

“If a parent had forgotten, but they really would like to opt out, [sic] then, it reminds [the parent] [sic] that they are opted in and can change their mind. But … I kind of think … it’s the parent’s responsibility [sic], if they agree to stuff like this [sic], to keep it in mind. … If they just change their minds, it’s on them … to [sic] take that step”. [Mother, Interview 7]

“I think if every two years it came up and say “Hey all of your data was used for this research in the past two years, here’s some potential stuff that could be coming”, that gives you an idea of what else could be researched. [sic] You can continue to consent to this. I think that would have a lot more information on it and it would make a little more sense to do that one. … You’re going to contact me and I’m going to say “Hey you, your research was used in this, and this and this and this and you know what do you think?”… “Do you want to keep going or not?”” [Mother, Interview 13]

“The good thing is that [sic] the data is there for two years, and then if [sic] something happens or the person changes their mind, every two years is a good amount of time to get whoever is doing the research to use that data. … It’s a reasonable amount of time and if you want to change your mind, you’re not locked for life. [sic] You can [sic] say for the next time, no thank you very much [sic] I don’t wish to participate and then your information can be taken down”. [Mother, Interview 16]