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ETHICS ASPECTS OF PROTECTING AND SHARING RESEARCH DATA: INFORMED CONSENT

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Title: ETHICS ASPECTS OF PROTECTING AND SHARING RESEARCH DATA: INFORMED CONSENT


1
ETHICS ASPECTS OF PROTECTING AND SHARING RESEARCH
DATA INFORMED CONSENT
.
..
......... RESEARCH DATA
MANAGEMENT TEAM UK DATA ARCHIVE UNIVERSITY OF
ESSEX ..
LOOKING AFTER YOUR RESEARCH DATA AN ESRC
ADVANCED TRAINING NETWORK COURSE UK DATA ARCHIVE,
COLCHESTER, 26-27 APRIL 2012
2
TOPICS
  • legal and ethical aspects of protecting, managing
    and sharing research data obtained from people
  • policy contexts
  • dealing with confidential research information
    and personal data
  • informed consent
  • developing agreements for obtaining informed
    consent from participants - including consent for
    data sharing

3
FOCUS
  • research with people as participants/studied
    subjects
  • confidential research data
  • legal aspects
  • ethical aspects
  • managing and sharing data
  • primary research data use
  • data use in teams of researchers/institutions
  • data reuse
  • data publishing
  • data archiving

4
STAKEHOLDERS IN RESEARCH
  • researchers
  • participants
  • funding agencies
  • research ethics committees
  • institutions
  • government bodies
  • archives/libraries
  • wider research community
  • public
  • All play a role in how we deal with confidential
    research data

5
RESEARCHERS OBLIGATIONS
  • duty of confidentiality towards informants and
    participants
  • duty to protect participants from harm by not
    disclosing sensitive information
  • duty to treat participants as rational,
    autonomous beings, able to make their own
    decisions on how the information they provide can
    be used, shared and made public (through informed
    consent)
  • duty to inform participants how information and
    data obtained will be used, processed, shared,
    disposed of, prior to obtaining consent
  • duty to wider society to make available resources
    produced by researchers with public funds
  • e.g. data sharing required by research funders

6
INTERNATIONAL POLICIES - DATA SHARING
  • OECD, UNESCO, Committee on Data for Science and
    Technology (CODATA) have policies that promote or
    recommend data sharing (Ruusalepp 2008
    www.jisc.ac.uk/media/documents/programmes/preserva
    tion/data_sharing_report_main_findings_final.pdf
    )
  • RCUK Common Principles on Data Policy
  • Publicly funded research data are a public good,
    produced in the public interest, which should be
    made openly available with as few restrictions as
    possible in a timely and responsible manner that
    does not harm intellectual property.
  • RCUK recognises that there are legal, ethical and
    commercial constraints on release of research
    data. To ensure that the research process is not
    damaged by inappropriate release of data,
    research organisation policies and practices
    should ensure that these are considered at all
    stages in the research process.
  • www.rcuk.ac.uk/research/Pages/DataPolicy.aspx
  • many international research funders have data
    sharing policies www.sherpa.ac.uk/juliet/

7
DATA PROTECTION ACT
  • data privacy/protection of personal information
    legislation
  • applies to personal information about living
    individuals
  • anonymised data is not personal

8
CONFIDENTIAL / SENSITIVE DATA
  • confidential data data or information given in
    confidence and data agreed to be kept
    confidential (secret) between two parties that
    are not in the public domain
  • e.g. information on business, income, health,
    medical details, opinion
  • sensitive data
  • e.g. data about an individual's race or ethnic
    origin, political opinion, religious beliefs,
    trade union membership, physical or mental
    health, sex life, criminal proceedings or
    convictions,...

9
RESEARCH WITH CONFIDENTIAL DATA
  • not all research data obtained from people are
    personal data
  • do personal data or confidential data need to be
    collected in research?
  • levels of confidentiality needed are research
    related
  • e.g. oral history vs. community study
  • take reasonable steps to protect identities
  • avoid over-estimating confidentiality (no
    paranoia)

10
OPTIONS SHARING CONFIDENTIAL DATA
  • Researchers to consider
  • obtaining informed consent , also for data
    sharing and preservation/curation
  • protecting identities e.g. anonymisation, not
    collecting personal data
  • restricting/regulating access where needed (all
    or part of data) e.g. by group, use, time period
  • securely storing personal or sensitive data
  • Consider jointly and in dialogue with
    participants
  • Plan early in research

11
ETHICAL ARGUMENTS FOR ARCHIVING AND SHARING DATA
  • store and protect data securely
  • not burden over-researched, vulnerable groups
  • make best use of hard-to-obtain data (e.g.
    elites, socially excluded)
  • extend voices of participants
  • provide greater research transparency
  • enable fullest ethical use of rich data
  • In each, ethical duties to participants, peers
    and public may be present

12
INFORMED CONSENT
  • what does it mean for consent to be informed?
  • purpose of the research
  • what is involved in participation
  • benefits and risks
  • mechanism of withdrawal
  • data uses primary research, storing,
    processing, reuse, sharing, archiving,
  • strategies to ensure confidentiality of data
    where this is relevant anonymisation, access
    restrictions

13
IS INFORMED CONSENT POSSIBLE FOR DATA REUSE?
  • difficult if use strict interpretations of fully
    informed and explicit
  • but there are other solutions
  • general or enduring consent (in use in medical
    research)
  • re-contact possible but can be costly
  • archive data without consent?
  • less sensitive data older data

14
INFORMED CONSENT PRACTICAL ASPECTS
15
A GOOD CONSENT FORM
  • Considers
  • 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

16
WHEN TO ASK FOR CONSENT
Pros Cons
One-off Simple Least hassle of participant Research outputs (even questions, not known in advance Participants will not know all content they will contribute
Pro-cess Most complete for assuring active consent Might not get consent needed before losing contact Repetitive, can annoy participant
17
RIGHT TO WITHDRAW
  • Right to withdraw one of key features of
    consent
  • What about already collected data?
  • not usually allowed (at least in most surveys)
  • but most likely would be discussed
  • What if project is longitudinal?
  • Timescapes solution
  • permit withdrawal, but
  • explain to participants the cost to the project
    of data that would be lost

18
FORMAT FOR CONSENT
  • Written
  • more solid legal ground (participant agreed to
    disclose confidential info)
  • not possible for some cases infirm, illegal
    activities
  • can be perceived to be off-putting
  • can help (or even be required) by Research
    Ethics Committees
  • 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
  • best if recorded
  • Law is not specific
  • written consent not used on surveys-implicit by
    taking part
  • need to match format of consent with research
    content

19
TYPES OF MATERIAL
  • Ranging from less sensitive (survey) to highly
    sensitive (medical)
  • Most qualitative research falls in-between
  • Text and transcripts
  • Audio recordings, still and moving images
  • data more likely to reveal identities
  • data more likely to be rendered useless by
    anonymising (distortion or blurring)
  • gaining consent or limiting access are better
    alternatives than anonymisation

20
SPECIAL CASES OF PARTICIPATION
  • Children
  • at what age can they give consent?
  • parental consent
  • Employees
  • if using workplace for research
  • employee may own duty of confidentiality to
    employer
  • Vulnerable participants - need to balance
  • protection from harm with
  • right to participate
  • Retrospective consent
  • covert research, observational psychological
    experiments
  • informed??

21
RESOURCES
  • British Sociological Association
    www.britsoc.co.uk/equality/StatementEthicalPrac
    tice.htm
  • British Sociological Association - Visual
    Sociology Group Ethical guidelines
    www.visualsociology.org.uk/about/ethical_statemen
    t.php
  • Methodological Issues in Qualitative Data Sharing
    and Archiving www.cardiff.ac.uk/socsi/hyper/QUADS
    /index.html
  • National Centre for Research Methods - informed
    consent project www. southampton.ac.uk/socsci/soc
    iology/research/projects/informedcontent.html
  • Oral History Society guidelines
    www.ohs.org.uk/ethics/
  • Social Research Association www.the-sra.org.uk/et
    hical.htm

22
OUR DATA MANAGEMENT SERVICES
  • UK Data Archive Research Data Management Support
    Services
  • datasharing_at_data-archive.ac.uk
  • Economic and Social Data Services
  • www.esds.ac.uk/aandp/create
  • RELU-Data Support service
  • relu.data-archive.ac.uk
  • ESRC Research Development Initiative Training
    Programme
  • www.data-archive.ac.uk/create-manage/projects/rdi-
    dm
  • JISC Data Management Planning project
  • www.data-archive.ac.uk/create-manage/projects/jisc
    -dmp

23
CONTACT
UK DATA ARCHIVE UNIVERSITY OF
ESSEX WIVENHOE PARK COLCHESTER ESSEX CO4
3SQ ... T 44 (0)1206
872001 E datasharing_at_data-archive.ac.uk W
www.data-archive.ac.uk ...
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