Pros and Cons of consent

Reasons to ask for consent Amount of information needed/ linkage Research should be voluntary Confidentiality Secondary use Expectation Free society/ human rights Individual choice/ ownership/ veto Polite/ respect/ value people Protect other people Reassuring Avoid risks/ harms Build trust Want to know Morally/ ethically right Legal requirement Sensitive data

Legally and Morally right “They’re not. But it’s – morally it’s not right. It- you shouldn’t be able to have that sort of power to go and look and peoples information if, even if they don’t know you’re doing it it’s still morally not a thing that should be done Data Protection Act really. That’s what it’s there for.” (Harry, 19, uni student, C90s engaged)

Secondary use of data “…I feel there’s kind of a sort of particular air of kind of confidentiality in the fact that that’s kind of publicised a lot umm, [laugh] that, I don’t know I feel like, that’s slightly different in that kind of, um, you feel like you have a right to, sort of, ownership of that information and by sort of talking to a doctor about it, you’ve permitted that certain doctor to kind of, share that information with you but you… they don’t have the right to kind of share that with other people without your permission. You know, they could call a nurse in, but you’d be like, “oh no I don’t want that”, or “yes please”.” (Polly, 19, uni student, 9 GP visits, C90s engaged)

I’ve nothing to hide but… “Well as long as they ask me….I would be able to say if I said oh it depends probably how sensitive the information is cos I said I don’t have a police record so I wouldn’t really care about them using that but, well I don’t actually have medical history but if I was someone who had a medical history that was sensitive I would want them to ask me.” (Jack, 18, unemployed, C90s engaged)

Disadvantages of consent Bias Cause harm by asking People change minds Costs – time and money People don’t agree! Forget to reply Need contact details Lack of knowledge about ubiquitous data collection When and who to ask? Over burden people

Cause harm by asking R: So, yeah I think it, yeah I don’t think they should need to be asked, yeah, no I like it like that I don’t think you should need to ask them. Coz then, there’s so much like you can upset people or you can get in trouble coz it’s teenagers init, it’s a very objective [sic subjective] thing I: So, it’s all right, so that’s kind of over-riding the privacy kinda thing R: Yeah coz it’s not necessarily, it’s like when I said like it’s not the individual it’s a number at that point in it you’re not looking at the person (Paula, 18, doing A-levels, 7 GP visist, never enrolled C90s)

Who to ask? Genetic data “I kind of think of that ugh it should just be me but on the other hand technically my medical records would kind of bare some relation to my parents because of well, depends what they were. If you get ugh well this is probably extreme but kind of genetic rec- records from obviously, that’s ugh partially parents so that should probably go though them as well.” (Brendan, 17, doing A-levels, C90s engaged)

Consent is not necessary if… Already consented Lack capacity/ mentally ill Depending on data source/ sensitivity of data In an emergency Dead Gov/ top researchers Expected Low risk Not C90s doing research In public interest

If someone had died I: Is it OK to use the information of people who’ve died? R: Yeah. I: (2) So is it OK just to use that information? R: Yeah. Yeah. I: Why’s that? R: Cos then you can use it and then you can warn more parents about it. (Ryan, 17, unemployed, special educational needs, C90s engaged)