Ethical Sharing and Reuse of Qualitative Data Law and Ethics in e-Social Science Workshop 5th International Conference on e-Social Science Maternushaus, Cologne 24 June 2009 Libby Bishop Timescapes Project-University of Leeds UK Data Archive-University of Essex

Overview Ethical frameworks and research ethics Archives role in a broader ethical debate – trust Formal and relational systems for building trust Ethics and archives-example of consent

Data collection& analysis Publication and dissemination Archiving and sharing Participants Most ethical debates centred here Scholarly community Some here… Public, funders, stakeholders But very little here… We need to expand the scope of research ethics

Archives have multiple roles in an expanded ethical terrain Prevent duplicative, wasteful research Resources freed from data collection available for analysis Protect over-researched, vulnerable groups Assist dissemination of primary research Provide greater research transparency Enable fullest ethical use of unmined data Extend voices of participants Help legitimate research to the public

Network of trust Regulations Standards Funders Data Archive End Users t2 Data Subject t2 Data Creator t2 Data Subject t1 Data Creator t1 End Users t1

Formal procedures for sharing confidential research data (UKDA and Timescapes) Obtain informed consent Protect identity (one option is anonymisation) Restrict access (e.g., by group, purpose, time)

Timescapes Affiliates and Associates Authorised Users Public Multimedia data and metadata created (SIP*) Data, metadata, contextual info available to search (DIP*) Standards-compliant data prepared for preservation Timescapes data preserved (AIP*) Virtual catalogue record-pointer to resources held at UoL Information and Data Flows among Researchers, the Timescapes Repository, and the UK Data Archive Timescapes / LUDOSDisaggregated preservation service *SIP-Submission Information Package *AIP-Archival Information Package *DIP-Dissemination Information Package Rights and data management, metadata standards Strands Research Projects Data producers and users Data users Data Information Rights and data manage- ment, metadata standards

Building relational trust Security incident revealed that: –Chains are long and fragile –Breaks are inevitable in iterative design (on a budget) –Repair is time-consuming –Outcome is uncertain Why bother? Arent rules easier? –Quality and quantity of data and (rich) metadata –Building community of users (not hoping they will come) –Researcher engagement is necessary to deter managerialism

Explicit, informed consent for reuse? Consent for reuse can not be explicit, but –Neither can much emergent research rely on explicit consent Alternative is open or blanket consent What if participant objects to conclusions of reuse (e.g., grandmother)? It is not (only) about reuse; it is about who has rights to interpret data

No position is epistemologically privileged "Just as I have argued that a single researcher cannot unequivocally claim epistemological privilege simply because they belong to a specifically defined social group or occupy a specific social location, so too we cannot assume that a single research subject (or even a group of research subjects) unequivocally possesses such privilege. Mason, 2002; Qualitative Researching.

Concluding thoughts… Deeper grounding in ethical thought improves the debate Consideration of duties, especially to others in additional to participants, is constructive Archives, as trust brokers, are positive agents in this ethical conversation Ethics of reuse (almost) always has implications beyond archiving

Data Sharing Review – 2008 (b) As a general rule, it seems right that personal information obtained consensually for a specified purpose should not then be used for an incompatible purpose that goes outside the terms of the original consent…For this reason, the second Data Protection Principle, which prohibits reuse of information in any manner that is incompatible with the original purpose, stands as a significant safeguard. It is important to note, however, that incompatible with is not the same as different from (5.17). Consent clauses should be written in a way that provides for reasonable additional uses of information, while giving patients and others sufficiently specific explanations and safeguards to prevent inappropriate uses or sharing of information about them (5.20).