This document summarizes an overview of ethical frameworks for sharing and reusing qualitative research data presented at a workshop. It discusses the role of archives in facilitating ethical data sharing and building trust. Formal procedures for sharing confidential research data, such as obtaining informed consent and restricting access, are described. The need to consider duties to others beyond direct research participants in the ethical debate is also highlighted.

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. 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. 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. 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. 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. 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. 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. 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. 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. 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. 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. 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