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. Author manuscript; available in PMC: 2023 Jan 1.
Published in final edited form as: Ethics Behav. 2021 Mar 4;32(1):22–31. doi: 10.1080/10508422.2021.1884079

Table 3.

Sample Quotes About Willingness to Share Data with Researchers and For-Profit Organizations.

Themes Participant quote
General willingness to share data with researchers Well, anything that could help find treatment or cure for my diseases would be good. I would just be concerned with privacy. But I mean, if it’s not direct messages, I don’t see a problem with it really.
As long as I am confident that the research, that I will be anonymous and it will not come back to me, I am pretty comfortable sharing information with researchers, because I think that they’re trying to help and if I don’t share it, how can they help me? So I want to be able to get that help just as long as I know that it’s confidential.
I think it’s more data breaches and making sure my information stays safe. Besides that, I don’t really have any more problems with sharing all that.
I guess it depends on the records. If it was something like pathology reports for an endoscopy for (condition), that would be used to further research and development of medications to treat it, if it would be, yeah, I’ve taken the biopsies and the information that I’m using that to further treatments, I think I’d be okay with that. I think some other things, maybe not. I think it really just depends on the type of health data. It wouldn’t be an all or nothing. It wouldn’t be yes or no. It’d be this specifically yes, this no.
Lack of willingness to share with for profit organizations I see researchers using it for a purpose to potentially benefit people; assuming you guys would be using this information to find something out. And I guess that would be like Amazon or Google or corporation like that to do it just for the purpose of making money and where’s the data going? It’s not necessarily confidential and I don’t necessarily trust that.
I would be a little hesitant sharing to Google just because, you don’t know what they’re doing with that information. As opposed to if it’s for research then yeah, I would a hundred percent give my consent. But what is Facebook and Google and Amazon doing with my information. That’s what I would want to know before I could give consent.
Willingness to share data for COVID-19 purposes Yeah, I think the more narrow your scope is, the more willing I would be. I think just saying, let’s have access to all your stuff, I’d be, no, thank you.