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Who should decide whether or not record linkage is ethical?

Who should decide whether or not record linkage is ethical?. Indecisive, confused or uninformed?. Reasons to change minds. Abstract v applied Depends on data type Whether or not data anonymous Consent methodology Process of drawing Public interest C90s v external researchers Governance .

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Who should decide whether or not record linkage is ethical?

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  1. Who should decide whether or not record linkage is ethical?

  2. Indecisive, confused or uninformed?

  3. Reasons to change minds • Abstract v applied • Depends on data type • Whether or not data anonymous • Consent methodology • Process of drawing • Public interest • C90s v external researchers • Governance

  4. Case Study: Stacey (17, unemployed, 9 GP visits, never enrolled C90s)

  5. Not one solution “You can’t, you can’t, you just can’t cos not everyone’s going to be pleased or I mean I suppose you could do the majority like please the majority but even then the minority will be massive because …There’s a lot of us.” (Cate, 17, doing A-levels, never enrolled C90s)

  6. Societal attitudes Well, think… we this whole idea of a right to privacy is something we all think about a lot in this country and maybe it doesn’t have to be that way, that’s just sort of the way we are, you know, and if we didn’t, if it wasn’t such a hot topic at the moment maybe, then, then yeah, it could just be just normal for everyone’s details to be available for all sorts of research, and maybe illnesses would be cured and stuff…. But I think the way it is at the moment, it is a really important topic and people are really thinking about you know, privacy and information and you know, identity fraud and all that sort of stuff. (Kerry, 18, at uni, C90s engaged)

  7. Willing to abdicate responsibility • Case Study: Vince (19, unemployed, C90s engaged) • Very aware of where data is held about him • Likes his privacy and knows there are European laws to protect his privacy. • Information should only be shared on need to know basis. • Thinks researchers accessing data needs governing and should only be given anonymously. Aware that to link records needs names. Very aware of limits of anonymisation and validity of data. • Thinks people should have a unique identifying number that links the databases. • Consent not as important as anonymity because he is not in a place to regulate his information correctly, more important the system is set up properly. • Worried about data security.

  8. Methodological Challenges • How to engage YPs about record linkage • Challenging view of world? • How to analyse inconsistency/ changing views • Social desirability • Approach to ethics • Prior knowledge/ experience • Use of analogies to make sense • Personality type/attitude

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