ETHICS%20ASPECTS%20OF%20PROTECTING%20AND%20SHARING%20RESEARCH%20DATA:%20INFORMED%20CONSENT

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ETHICS ASPECTS OF PROTECTING AND SHARING RESEARCH
DATA INFORMED CONSENT
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......... 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
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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

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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

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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

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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

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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/

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DATA PROTECTION ACT

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

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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,...

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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)

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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

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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

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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

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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

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INFORMED CONSENT PRACTICAL ASPECTS
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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

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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
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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

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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

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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

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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??

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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

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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

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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 ...