Changing constructions of informed consent: qualitative research

1
Changing constructions of informed consent
qualitative research ICTs

• Mary Boulton, Health Social Care
• Tina Miller, Social Sciences Law
• Oxford Brookes University

2
Question

• How have developments in ICTs shaped the formal
  requirements for, and situated practicalities of,
  obtaining informed consent in face-to-face
  qualitative research?

3
Outline

• Personal context Reflections on 35 years of
  qualitative research
• Social context Increasing uncertainty, fluidity
  and fragmentation
• Ethics context From a moral discourse to a
  discourse of regulation
• Shifting boundaries between the personal and
  professional
• Moving forward Democratisation of research
  ethics?

4
Social Context Increasing uncertainty, fluidity
fragmentation

• Shift from modernity to late, high, post or
  reflexive modernity
• Certainties of previous times can no longer be
  relied on
• Relationships have become more fluid, resulting
  in both
• Greater individual choice
• Increased fragmentation of social cultural life
• Consequences for qualitative research
• Consequences for research ethics

5
Ethics context From a moral discourse to a
discourse of regulation

• A number of developments challenged the
  acceptability of self-regulation in social
  sciences and led to the medicalisation of
  research ethics
• Series of well-publicised scandals
• Growing emphasis on multi-disciplinarity
  international research
• Growth of consumerism
• Consequences
• Spread of research ethics committees
• DH Research Governance Framework
• Major funders require sign-up by institutions
• ESRC Research Ethics Framework

6

• What does this mean for qualitative research?
• Growth of standardised, formalised practices
  around research ethics in general and Informed
  Consent in particular
• Growing mismatch between increasingly
  standardised, formalised practices around
  research ethics and increasingly complex and
  fluid nature of qualitative research

7
Shifting boundaries between the personal and
professional

• Feminism and a shared sense of solidarity
• Consumerism and challenges to the legitimacy of
  research researcher
• Digital technologies and the incorporation of the
  researcher into the participants circle

8
Feminism and a shared sense of solidarity

• Questioned traditional paradigms of research
  relationships
• Reciprocal, collaborative style of research,
  involving genuine rapport based on common sense
  of solidarity
• High level of trust in me because I was a woman
  like them
• Challenged traditional, individualised concepts
  of IC
• Sense of responsibility to women in study and
  broader community of women as mothers more
  important than IC given for interview
• good faith between us
• Framed by very limited ICTs
• Few telephones
• Direct personal contact more common and acceptable

9
Consumerism and challenges to the legitimacy of
research researcher

• Greater expectation that research would be of
  benefit to participants, directly or indirectly
• Provided motivation or justification for taking
  part
• Created greater demands on researcher to meet
  participants expectations
• Raised new issues for IC Consent to what?
• Participants might reveal more than they had
  intended
• Participants often recast interviews as
  counselling

10

• Obtaining IC became more problematic
• Changes in womens employment meant fewer at home
  during day
• Risk that genuine rapport became faked
  friendship
• Participants scepticism about value of taking
  part in research
• Framed by two major developments around ICTs
• Creation of electronic databases
• Data Protection Act
• Created barriers between researcher potential
  participants
• Uninformed non-consent (decline invitation)
• Denied opportunity to give consent (disempowered)

11
Digital technologies and the incorporation of
researcher into participants circle

• Framed by spread of digital technology throughout
  British society
• E-mail, mobile phones, digital photographs
• Raised new concerns about IC
• personal relationship established before
  researcher participant met for interview
• When does IC end and data collection begin?
• When does making an effort become harrassment?
• Challenges to researchers privacy

12
Moving Forward The democratisation of research
ethics?

• E-mails and documenting the process of informed
  consent
• Study Websites as a forum for wider engagement
• Participants /or their representatives, Steering
  Group, Ethics Committee
• BUT Is this establishing trust or blurring
  responsibilities?
• What new ethical issues are raised
• eg privacy, confidentiality