Ethical issues in qualitative
research
        Martin Stevens
         14/02/2013
              Research ethics
•   Ethics as a subject
•   Where are the limits
•   What and why research ethics
•   Ethical issues in qualitative research
•   Role of ethics and other review processes
               Ethics as topic
Ethics can be thought
of as the study of good
conduct and of the
grounds for making
judgements about
what is good conduct
Trusted, 1987; Birch et
al., 2002)
    What status do ethics have?
• Objectively true?
• Relative to culture?
• Purely subjective?
             Origins of ethics
• Outcome of evolution?
  – Ethics develops from mutual delousing?
    Philosophical approaches to ethics
• Absolutist (Kant, Rawls)
    – Ethical values exist in themselves
    – Rules can be derived that apply to all
• Utilitarian (Mills)
    – Actions judged on the basis of their
      consequences for the general good
    – Allows a more relativist stance – what is good varies across cultures
• Virtue ethics (Aristotle)
    – Based on the character of the individual
    – ‘Ethical behaviour is seen as less of the application of moral principles
      and rules, than as the researcher internalising moral values’
• Value-based model (Cronin)
    – Ethics part of the relationships with society
    – Emphasis on care and responsibility
                 Limitations
• Application in the messy world
• Critiques of feminism, multi culturalism –
  (Doppelt, 2002)
• Different conceptions of individuals and
  society
• Eg Role of self reflexivity and relationship
        Making moral judgements
• Role of emotion, intuition and Reason
• Neurological basis – ‘ventromedial portion of
  the frontal lobes’ (Phineas Cage)
• ‘To know, but not to feel’.
Singer, (2005)
                 The Trolley Problem
• Flick the switch ?
• Push the man off the bridge?
Singer, (2005)
              Ethical Principles?
•   Respect for persons
•   Honesty
•   Benevolence
•   Do no harm
•   Justice
                          • Particular judgement on
                            the basis of each case
                          • Experience and social
                            construction of ethical
                            choice
      Research ethics - principles
‘Research is essential to the successful
promotion of health and well-being’
‘The dignity, rights, safety and well-being of
participants must be the primary consideration
in any research study’.
Source – Department of Health Research
Governance Framework
           Why research ethics
•   Nuremberg code
•   Tuskegee Syphillis study
•   Milgram conformity study
•   Stanford prison experiment
   Ethics and qualitative research
• Ethical considerations are more complex
  than quantitative
  – More personal methods
  – More intrusive – into the everyday world of the
    participant
  – Greater role for the researcher-participant
    relationship (therefore ethical interaction)
• Only ethical research is good research?
       Ethical considerations of
         qualitative research
 They are empirical and theoretical and permeate the
 qualitative research process. The complexities of
 researching private lives and placing accounts in the
 public arena raise multiple ethical issues for the
 researcher that cannot be solved solely by the
 application of abtract rules, principles or guidelines.
 Rather, there are inherent tensions in qualitative
 research that is charactirised by fluidity and inductive
 uncertainty and ethical guidelines that are static and
 increasingly formalised (Dence et al 2004: 10)
http://www.respectproject.org/ethics/guidelines.php
Ethical decision-making
       The value of ethics codes and
        frameworks and guidelines
• Usually combine different ethical reasoning
  and approaches
• A pragmatic set of ethical considerations
• A useful overarching guideline
• Help develop consistent practice
• Not a fixed set of rules
• Researchers can depart from – only after
  deliberation
                     Guidelines
Respect project                 Social Research Association
• Responsibilities to Society   • Obligations to society
• Professional expertise and    • Obligations to funders and
  standards                       employers
• Responsibilities to           • Obligations to colleagues
  participants                  • Obligations to subjects
                                • Ethics committees and IRB’
          Responsibilities to society
•      The research aims of any study should both benefit society
       and minimise social harm.
•      Researchers should endeavour to balance professional
       integrity with respect for national and international law.
•      Researchers should endeavour to ensure that research is
       commissioned and conducted with respect for, and awareness
       of, gender differences.
•      Researchers should endeavour to ensure that research is
       commissioned and conducted with respect for all groups in
       society, regardless of race, ethnicity, religion and culture.
•      Researchers should endeavour to ensure that research is
       commissioned and conducted with respect for under-
       represented social groups and that attempts are made to
       avoid their marginalisation or exclusion.
•      Researchers should endeavour to ensure that the concerns of
       relevant stakeholders and user groups are addressed.
    http://www.respectproject.org/ethics/guidelines.php
Professional expertise and standards
•      Researchers should endeavour to ensure that an appropriate
       research method is selected on the basis of informed
       professional expertise.
•      Researchers should endeavour to ensure that the research
       team has the necessary professional expertise and support.
•      Researchers should endeavour to ensure that the research
       process does not involve any unwarranted material gain or loss
       for any participants.
•      Researchers should endeavour to ensure factual accuracy and
       avoid falsification, fabrication, suppression or
       misinterpretation of data.
•      Researchers should endeavour to reflect on the consequences
       of research engagement for all participants, and attempt to
       alleviate potential disadvantages to participation for any
       individual or category of person.
•      Researchers should endeavour to ensure that reporting and
       dissemination are carried out in a responsible manner.
    http://www.respectproject.org/ethics/guidelines.php
Professional expertise and standards
•   Researchers should endeavour to ensure
    that methodology and findings are open for
    discussion and peer review.
•   Researchers should endeavour to ensure
    that any debts to previous research as a
    source of knowledge, data, concepts and
    methodology should be fully acknowledged
    in all outputs.
    Responsibilities to participants
•   Researchers should endeavour to ensure that
    participation in research should be voluntary.
•   Researchers should endeavour to ensure that decisions
    about participation in research are made from an
    informed position.
•   Researchers should endeavour to ensure that all data
    are treated with appropriate confidentiality and
    anonymity.
•   Researchers should endeavour to ensure that research
    participants are protected from undue intrusion,
    distress, indignity, physical discomfort, personal
    embarrassment, or psychological or other harm.
        Voluntary participation
• Limitations in statutory research – eg census
• When does encouragement and persuasion
  become pressure?
• Role of gatekeepers
• How to manage proxy participants
The ‘Moral magic’ of consent
 • Giving consent confers rights on others
 • Witholding or withdrawing consent witholds or removes those
   rights
 • Consent is a state of mind
    – Always refers to an object – consenting to x, y, z and ‘intentional state’
      (Hurd 1996: 125)
    – therefore is changeable
 • Consent is not
    – ‘negligent ignorance’ likelihood of something happening
    – Just fore knowledge of the occurrence of an action
    – just desiring an action
 • Consent involves a conscious choice to confer the right to do x y
   or z.
 • Consent requires
    – Capacity to withold consent (ie no duress)
    – Capacity to understand what is being consented to (MCA)
     Hurd, 1996
                 More on consent
• People usually consent to a description of the object not the
  object itself
• Therefore – an inaccurate description of the object can mean that
  there is no consent
• Consent is a choice to act or deliberately not prevent allow or
  facilitate the act of another – it is not intending actions of the
  other
• Also consent needs to be freely made – no duress and with
  capacity -autonomous person
• There is an open question as to how much someone needs to
  know about what they are consenting to
• The theory is that in order to consent you need the similar levels
  of autonomy as needed to commit the acts to which one
  consents
    Hurd, 1996
             Confidentiality
• Why maintain confidentiality?
• A standard promise for researchers
• Anonymity / Confidentiality
• Disclosures of harm to others
• Participants who want to be
  named
• Presenting findings
  Protect participants from harm
• What constitutes undue
  intrusion, distress or
  harm
• What causes the harm –
  how to address the
  reactions of different
  participants
• Are harm and intrusion
  ever justified?
    Ethical issues in qualitative research
•   Research design
•   Researcher/Participant relationships
•   Interpretation of data
•   Predicting the impact of different methods
    on particular participants
     – Eg potential source of distress
• Balance benefits with potential harm
• Consider legal requirements in terms of
  disclosure of harms
    Orb et al 2000
  Making decisions in qualitative
            research
• Consider how to balance the moral and
  ethical codes of different actors
• Balancing conflicting principles/moral
  impulses
• Question the primacy of privacy – relate to
  different cultures
• How to respond where the moral codes of
  the researcher or the sponsoring
  organisation are challenged
 Researcher/Participant relationships
• Increased impact on participants
• Importance of power relationships
• Participation of people in natural
  environments
• Deception?
            Research practice
• Where the purpose is to understand
  differeing perspectives – how does this affect
  a duty of confidentiality?
• Huge value of understanding both sides of a
  relationship – adds to the strength of the
  research
• Raises ethical challenges
         Example – Research Dyads
Researcher interviewed a married couple, Andy and Bella, about their
care relationship (Andy cares for Bella). She met with them both twice,
speaking first to Andy and then to Bella. While speaking to Andy, Bella
“made herself scarce,” and Andy did likewise when it was his wife’s
turn to talk. Andy and Bella were experiencing difficulties in their care
relationship, and it seemed possible that there was violence between
the couple.
During the first interview with Andy, he mentioned one very tense
episode regarding his care for Bella. The event seemed really important
as a transitional moment in their caring exchanges, and when the
researcher met with Bella, she was keen to hear the other side to the
story.
Forbat and Henderson 2003
‘Stuck in the middle’? Ethical
questions from dyad research
• To what extent would it be ethical
  to ask her directly about this episode?
• If Bella speaks spontaneously of the event,
  what are the ethics of then publishing
  accounts from husband and wife alongside
  each other?
• What are the ethical protocols for
  confidentiality between research
  participants?
  Forbat and Henderson (2003)
 Ethical challenges from dyad research
• Conflict of interest
   – Between researcher and the participants
   – Between the participants
• Imbalance
   – In relationship between researcher and participants
   – In terms of ethical and ideological concerns
• Taking sides
   – Explicit strategies re confidentiality and neutrality and
     sharing transcripts
• Intrusion
   – Affecting the relationships
   – Allow for withdrawal, but consider how to explain to other
     party
Forbat and Henderson (2003)
  More ethical challenges from dyad
               research
• Inclusion
  – How to make sure both parties consent and allow
    equal opportunity not to take part or to withdraw
• Influence
  – How should issues raised by one party be raised in
    interviews with the other – if they do not come up
    spontaneously?
• Disseminating results
  – Double the information – double the chance of
    breaking confidentiality
  – Partners recognising their own contribution also
    recognise their partners – share transcripts?
     Questions to ask in planning
• What prior discussions about confidentiality will
  you have with participants?
• How will you maintain confidentiality within the
  process of interviewing?
• How will you handle potential difficulties within
  the interview, such as questions about the other
  participant, or issues of interest raised by the
  other participant?
• How will you deal with the transcription and
  transcription return process?
 Forbat and Henderson (2003)
Examples of dilemmas (discussion)
•   Covert Research
•   Breaking confidentiality
•   Offering incentives
•   Distressing topics
       Sources of ethics review
• National Research Ethics Service
  (www.nres.nhs.uk)
• Social Care Research Ethics Committee
  (www.screc.org.uk)
• University Research Ethics Committees
  http://www.arec.org.uk/
• National Offender Management Service
  (www.justice.gov.uk/publications/research-
  and-analysis/noms)
Principles of Research Ethics Review
• Reciprocity
• Avoidance of
  ‘double-handling
• Proportionality
• Independence
                                ‘At Last! An ethics committee that will
• Researcher-led                listen to reason’
    Securing ethics approval: the route map for social care
   researchers http://www.screc.org.uk/files/routemap.pdf
           Other approvals needed
• Research Governance Framework - five domains
  (http://www.dh.gov.uk/en/Publicationsandstatistics/Publi
  cations/PublicationsPolicyAndGuidance/DH_4108962 )
   –   Ethics;
   –   Science;
   –   Information;
   –   Health, safety and employment;
   –   Finance and intellectual property.
• Approvals required from local authority Research
  Governance for research involving adult social care
• For research involving NHS patients and staff, Research
  and Development approval required from each NHS Trust
  involved (Research Passports)
   Other issues around approvals
• Mental Capacity Act (2005) – placed legal
  duties on researchers
• Academy of Medical Sciences (2011) –
  proposals to streamline clinical research
                    Resources
• The Respect Project
  – www.respectproject.org/ethics
• The Social Research Association
  – www.the-sra.org.uk
• KCL Research Ethics
  – www.kcl.ac.uk/innovation/research/support/ethics/i
    ndex.aspx
• Department of Health Research Governance
  Framework
  – www.dh.gov.uk