Transcript Pros and Cons of consent

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
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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
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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…
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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)