Changing constructions of informed consent: qualitative research & ICTs

1. School of Health and Social Care 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? School of Health and Social Care

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? School of Health and Social Care

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 School of Health and Social Care

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 School of Health and Social Care

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 School of Health and Social Care

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 participant’s circle School of Health and Social Care

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 School of Health and Social Care

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’ School of Health and Social Care

10. Obtaining IC became more problematic • Changes in women’s 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) School of Health and Social Care

11. Digital technologies and the incorporation of researcher into participant’s 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 researcher’s privacy School of Health and Social Care

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 School of Health and Social Care