Ethic al S haring and Re us e
    o f Qualitative Data
  Law and Ethic s in e -S o c ial S c ie nc e Wo rks ho p
5 th Inte...
Ove rvie w

• Ethical fram orks and research ethics
               ew
• Archives’  role in a broader ethical debate
  –tru...
We ne e d to e xpand the s c o pe o f
            re s e arc h e thic s

               Data        Publication    Archivi...
Arc hive s have multiple ro le s in an
        e xpande d e thic al te rrain
• Prevent duplicative, w  asteful research
• ...
Netw of trust
                         ork


                                 Regulations        Standards



            ...
Fo rmal pro c e dure s fo r s haring
  c o nfide ntial re s e arc h data
    (UKDA and Time s c ape s )

•Obtain inform co...
Information and Data Flows among Researchers, the Timescapes Repository, and the UK Data
Archive
                         ...
Building re latio nal trus t
• Security incident revealed that:
  –Chains are long and fragile
  –Breaks are inevitable in...
Explic it, info rme d c o ns e nt fo r re us e ?
• Consent for reuse can not be explicit, but
  –Neither can m  uch emerge...
No po s itio n is e pis te mo lo g ic ally privile g e d


"Just as I have argued that a single
  researcher cannot unequi...
Co nc luding tho ug hts …
• Deeper grounding in ethical thought
  improves the debate
• Consideration of duties, especiall...
Data S haring Re vie w – 2008 (b )
“ a general rule, it seem right that personal
As                           s
 inform  a...
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Libby Bishop, Ethics Of Data Sharing Ncess Jun 09 Final

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Libby Bishop's presentation for the Law and Ethics in e-Social Science Workshop in Cologne, 23rd June 2009

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Libby Bishop, Ethics Of Data Sharing Ncess Jun 09 Final

  1. 1. Ethic al S haring and Re us e o f Qualitative Data Law and Ethic s in e -S o c ial S c ie nc e Wo rks ho p 5 th Inte rnatio nal Co nfe re nc e o n e -S o c ial S c ie nc e Mate rnus haus , Co lo g ne 24 June 2009 Libby Bishop Timescapes Project-University of Leeds UK Data Archive-University of Essex
  2. 2. Ove rvie w • Ethical fram orks and research ethics ew • Archives’ role in a broader ethical debate –trust • Form and relational system for al s building trust • Ethics and archives-exam of consent ple
  3. 3. We ne e d to e xpand the s c o pe o f re s e arc h e thic s Data Publication Archiving collection& and and analysis dissem ination sharing M ethical ost Participants debates centred here Som here… e Scholarly com unity m But very little Public, here… funders, stakeholders
  4. 4. Arc hive s have multiple ro le s in an e xpande d e thic al te rrain • Prevent duplicative, w asteful research • Resources freed from data collection available for analysis • Protect over-researched, vulnerable groups • Assist dissem ination of prim research ary • Provide greater research transparency • Enable fullest ethical use of “ ined” unm data • Extend voices of participants • Help legitim research to the public ate
  5. 5. Netw of trust ork Regulations Standards Funders Data Subject t1 Data Archive Data Subject Data Creator t2 t1 Data Creator t2 End Users t1 End Users t2
  6. 6. Fo rmal pro c e dure s fo r s haring c o nfide ntial re s e arc h data (UKDA and Time s c ape s ) •Obtain inform consent ed •Protect identity (one option is anonym isation) •Restrict access (e.g., by group, purpose, tim e)
  7. 7. Information and Data Flows among Researchers, the Timescapes Repository, and the UK Data Archive Timescapes Rights and data Strands Research manage- Multimedia Projects ment, data and metadata metadata standards Affiliates and Associates created (SIP*) Authorised Users Public Data, metadata, Virtual contextual catalogue info available record-pointer to search to resources (DIP*) held at UoL Rights and data management, metadata standards Timescapes data Timescapes / LUDOS Disaggregated preserved (AIP*) preservation service Standards-compliant data prepared for preservation *SIP-Submission Information Package Data producers and users Data *AIP-Archival Information Package Data users Information *DIP-Dissemination Information Package
  8. 8. Building re latio nal trus t • Security incident revealed that: –Chains are long and fragile –Breaks are inevitable in iterative design (on a budget) –Repair is time-consum ing –Outcom is uncertain e • W bother? Aren’rules easier? hy t – Quality and quantity of data and (rich) metadata – Building com unity of users (not hoping they w com m ill e) – Researcher engagem is necessary to deter m ent anagerialism
  9. 9. Explic it, info rme d c o ns e nt fo r re us e ? • Consent for reuse can not be explicit, but –Neither can m uch emergent research rely on explicit consent • Alternative is open or blanket consent • W if participant objects to conclusions hat of reuse (e.g., grandm other)? • It is not (only) about reuse; it is about w has rights to interpret data ho
  10. 10. No po s itio n is e pis te mo lo g ic ally privile g e d "Just as I have argued that a single researcher cannot unequivocally claim epistem ological privilege sim because ply they belong to a specifically defined social group or occupy a specific social location, so too w cannot assum that a e e single research subject (or even a group of research subjects) unequivocally possesses such privilege.” Mason, 2002; Qualitativ e Re s e arching .
  11. 11. Co nc luding tho ug hts … • 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 (alm ost) always has implications beyond archiving
  12. 12. Data S haring Re vie w – 2008 (b ) “ a general rule, it seem right that personal As s inform ation obtained consensually for a specified purpose should not then be used for an incom patible purpose that goes outside the term of the original s consent… For this reason, the second Data Protection Principle, w hich prohibits reuse of inform ation in any m anner that is incom patible w the original purpose, ith stands as a significant safeguard. It is impo rtant to no te , ho we ve r, that ‘inc o mpatible with ’ is no t the s ame as ‘diffe re nt fro m ’” (5.17). “ Consent clauses should be w ritten in a w that ay provides for reasonable additional uses of inform ation, w hile giving patients and others sufficiently specific explanations and safeguards to prevent inappropriate uses or sharing of inform ation about them (5.20). ” w w w .justice.gov.uk/reviews/datasharing-intro.htm

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