Obtaining informed consent Data Management and Sharing workshop Leeds and Essex, 11 March 2008.

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Presentation transcript:

Obtaining informed consent Data Management and Sharing workshop Leeds and Essex, 11 March 2008

A good consent form… Meets requirements of DPA –purpose of the research –what is involved in participation –benefits and risks –mechanism of withdrawal –usage of data – for primary research and sharing –strategies to ensure confidentiality of data (anonymisation, access,….) where this is relevant Simple Avoids excessive warnings Complete for all purposes: use, publishing, sharing

Issue 1: When to ask for consent ProsCons One- off Simple Least hassle of participant Research outputs, maybe even questions, not known in advance Pro- cess Most complete for assuring active consent Might not get consent needed early enough Repetitive, can annoy participant

Issue 2: Right to withdraw Right to withdraw – always possible for future participation What about already collected data? –Not usually allowed (7-Up case) –But most likely would be discussed What if project is longitudinal?

Issue 3: Format for consent Written –More solid legal ground (participant agreed to disclose confidential info; intl data sharing) –Not possible for some cases: infirm, illegal –Can be perceived to be off-putting –Can help (or even be required) by RECs –May offer more protection for researcher Verbal-with or without recording –Can be difficult to make all issues clear verbally –Possibly greater risks for researcher Law is not specific –Written consent not used on large surveys –Need to match format of consent with research content

Issue 4: Types of material Ranging from less sensitive (survey) to highly sensitive (NHS protocols for medical) Most qual research in-between… Text and transcripts Audio recordings Still and moving images –Different legal position-favours producers (researcher/institution) –Data more likely to reveal identities –Data more likely to be rendered useless by anonymising (blurring) –Gaining consent is a better alternative

Issue 5: Special cases of participation Children –under 16s not presumed competent –But if they understand, then parental consent not necessary, but… Employees Vulnerable-need to balance –Protection from harm with –Right to participate