Ethical Sharing and Reuse of Qualitative Data

Law and Ethics in e-Social Science Workshop5th International Conference on e-Social

ScienceMaternushaus, Cologne

24 June 2009

Libby BishopTimescapes 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 Userst2

Data Subjectt2

Data Creatort2

Data Subjectt1

Data Creatort1

End Userst1

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

Multimediadata andmetadatacreated(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 / LUDOS Disaggregated preservation service

*SIP-Submission Information Package*AIP-Archival Information Package*DIP-Dissemination Information Package

Rights and data management, metadata standards

Strands ResearchProjects

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? Aren’t 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).

www.justice.gov.uk/reviews/datasharing-intro.htm