Table 4 Reciprocity-related transcripts’ quotes

 Recognition

“I don’t like [the opt-out consent model] at all. … I feel like …you guys are deciding [sic] for me and I only have three months. Who [gave you] [sic] the right to give me only three months! …There are so many things that people can think when they read this. What if I missed my opportunity? What if I moved and I didn’t get the letter? What if …right? … I wouldn’t like it. …And it doesn’t mean that I wouldn’t participate, but I would think twice…” [Mother, interview 6]

“Well [sic] it might feel good to have that power, right. To be asked. We always like to be asked and then say yay or nay. So, ultimately I don’t think [the project-specific consent model is] a great idea, but I think it would make us feel good”. [Mother, focus group 2]

 Control

“Well [the project-specific consent model is] definitely good for people who are concerned. … [sic] To know that you’ll be directly contacted if anyone wants to use your information, would give people peace of mind. … I think for confidentiality like it would probably put her mind at ease knowing that she’ll be contacted personally”. [Mother, interview 3]

“It’s more secure because every time you can opt in or out depending”. [Mother, focus group 3]

 Convenience

“Sometimes having too many options… I’m just going to say [it]. We have so much paper that comes through: daycare and [sic] preschools. And it’s just all coming through and you’re like “ahh yeah what’s this about even again?” So … it’s keeping it simple. … You want to give people options because you want to make sure we’re respecting everybody’s beliefs and everything. But… I don’t even know what really [the] possibilities [are for] the pharmaceuticals?… I’m still a big fan of the, what is it the second choice, the broad one”. [Mother, focus group 4]

“[Asking for] consent every time … might be, depending on the number of researchers and that’s something I wouldn’t really know anything about, [but] that could be sort of overwhelming and kind of irritating … constantly having requests like “can I use your data today”. And then you get [sic] … four researchers asking next week. … And that might be irritating. [Mother, interview 5]”

 Consent as information-sharing

“I would like, if I trust you [sic], I would like to know, if you asked me. It can be one time. But [sic] if you decided it’s good someone for future [use] someone decided it’s good, like someone good, yeah you can [share]”. [Mother, interview 18]

“They would just be annoying. … I would want to be contacted now to say yes, we’re setting up this data bank and would you like your data included and that sort of thing and this is how it would be used and there would be a committee that would review this and it would go through ethics boards and I would like that explanation. … But, I definitely wouldn’t want to be contacted [for every project], I just think [sic] it’s overkill”. [Mother, interview 17]

“[The broad, periodic consent model] would be interesting, … every two years, if they’re asking for consent and let [the parent] know how your data has been used or how many studies it has been used. … [I]f it was me, [sic] it would make me feel good [sic] that [sic] something that I’ve done is [sic] actually helping people”. [Mother, Interview 1]

 Recognizing parent decisions

“Yeah [sic] I think [sic]… if you contacted [the child participants] when they became an adult or whatever, that would be another logistical [issue]. I think, as a parent, you just trust that. You just trust the consent of the parent when the child was a child”. [Mother, Interview 3]

“No, I don’t think [the child should be re-contacted or re-consented], not at all. … Because, they didn’t make the decision in the first place, [sic] their parents [did]. [sic] The participant was a mom who gave out the information, so [sic] no, I don’t think [the child] should be [sic] contacted, no. It’s data. … It’s for the good of everyone. So, I don’t think they should be contact[ed]”. [Mother, Interview 2]

“You would never think that a parent or a guardian would do something in their best interests, that isn’t in the best interests of their child. And I don’t see how giving their data like [this] would ever benefit the adult. [sic] I don’t think that would ever be taking advantage of the child”. [Mother, Focus Group 1]

 Logistics

Sometimes the [range] is really wide and then if you’re going to say this is [sic] strictly health or strictly [sic] education, stuff like that. [sic] But it can be still used for other things. … Using it as a correlation between certain things in the future that we don’t even know or don’t think about right now so. … It will be [sic], just to store it in the database a certain way… a lot of work and money”. [Mother, Interview 16]

“Unless it’s sort of one of these sheets that you can kind of feed into a machine to let it know who is consenting to what type of research [using the tiered model] that might be again logistically difficult to implement”. [Mother, Interview 5]

“You guy’s side [sic], whoever or any of the researchers, … [broad consent is] less cost than them going and getting new data themselves, but it is still a cost that seems unnecessary to try to follow up and contact each individual person for their data. [sic] It would be a lot of time and cost on their side and then for the person being contacted. [sic] I don’t know how many times [I would be contacted]. … Cause if I was being contacted weekly or even monthly, I think I would get irritated”. [Mother, Interview 11]

“[Broad consent is] definitely more efficient for you guys. You don’t have to keep contacting the people, less administrative stuff”. [Father, Interview 14]

 Point-of-contact

“I’m just wondering maybe if the secondary users want to contact somebody that it actually doesn’t come from them, but comes from the original source. If that makes sense … one point of contact, instead of multiple”. [Mother, Focus Group 3]

“So, I wouldn’t agree that if they shared my information, my address and name. [sic] What’s connected directly to you guys, like, to [the original cohort]. I’d really like you guys [to] contact me to update something but just you guys”. [Mother, Interview 2]

“I think it could be a possibility certainly. … I don’t know if I would want to be contacted directly by the secondary researcher. I think I would want to be contacted either by [sic] the data bank itself or the repository or whatever we’re calling it. … But I do think that let’s say a secondary researcher is using the data and they realize you know it would be really helpful you know to look at these kids now or to talk more to the parents or something. I wouldn’t mind having an ability to opt in [sic] to that kind of study but also to opt out and to not have to [sic] feel pressured. … I mean obviously researchers are not supposed to pressure people, but I mean I think I would feel less pressured if I was contacted by a neutral body rather than the researcher themselves”. [Mother, Interview 17]