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Informed Consent Prof. Jude Robinson, Department of Sociology, Social Policy and Criminology.

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Presentation on theme: "Informed Consent Prof. Jude Robinson, Department of Sociology, Social Policy and Criminology."— Presentation transcript:

1 Informed Consent Prof. Jude Robinson, Department of Sociology, Social Policy and Criminology

2 Why do we have ethics committees? Social research ethics are closely allied to medical research ethics (Beauchamp & Childress, 2001) Nuremberg Code (1947) Helsinki Declaration (1964) Local Research Ethical Committees (1968) Alder Hey Hospital – Research Governance Framework (Department of Health, 2001)

3 Ethical paradigms Medical and health research tend to use either: Rights-based approaches (Alderson, 2004) based on respect for individuals, and protection from harm; Based on moral principles, benefit, avoidance of harm, justice and equality, and freedom and autonomy, (Beauchamp & Childress, 2001); Utilitarian ethics, where if the research is helpful to many, it can justify being harmful to a few (Mill 1863/1891) Transformative ethics, concerned with issues of local justice and empowerment, with wide dissemination (Mertens, 2005)

4 Social science research Following strict guidelines can damage the integrity of research (Homan, 1991) Ethical research in social science is more : Context specific (Goodwin et al. 2003) Concerned with rights; respect; knowledge; and protecting the researcher (Homan 1991) Linked to professional codes of conduct: British Sociological Association (2002, March 2004). Statement of Ethical Practice for the British Socioogical Association Retrieved 25th January 2012, from pdf pdf

5 Critiques of relying on self-regulation But is guidance and self regulation enough? (Smyth & Williamson, 2004) Tendency for guidelines for ethical conduct to be developed in line with professional self interest ‘It is partly because the motives of researchers are complex that subjects are not easily or necessarily disposed to share their sense of the desirability of particular kinds of research. Just as investigative journalists may have a personal and economic interest in the discovery of a ‘story’ even if its publication may harm the individuals who are involved… so social researchers pursue ends to which the ends of the subject are incidental’ (Homan, 1991: 4)

6 So, formal ethical review? Principles, procedures and minimum requirements of the Framework for Research Ethics (FRE) There are six key principles of ethical research that the ESRC expects to be addressed whenever applicable: 1. Research should be designed, reviewed and undertaken to ensure integrity, quality and transparency. Economic and Social Science Research Council. (2012). Framework for research ethics Retrieved 25th January, 2012, from Ethics_tcm pdf Ethics_tcm pdf

7 Principles of Informed consent ‘The essence of the principle of informed consent is that the human subjects of research should be allowed to agree or refuse to participate in the light of comprehensive information concerning the nature and purpose of the research’ (Homan, 1991: 69) ‘In most circumstances, researchers need to provide potential participants with information about the purpose, methods, demands, risks, inconveniences, discomforts and possible outcomes of the research, including whether and how results might be disseminated.’ (Israel & Hay, 2006: 61)

8 Critiques of ethical regulation Faden & Beauchamp (1968) made the distinction between actually obtaining informed consent and the process involved in satisfying a regulatory body that the researcher has complied with their requirements ‘It is not always ethical behaviour that the profession seeks, but rather its appearance: a cynical exercise at best, and a hypocritical one at worst’ (Thomas & Marquart, 1987: 83)

9 Ethnography and research ethics Ethnography is qualitative research by participant observation during field work, where participant observation covers a mix of observation and interviewing. This can be either total immersion, where the researcher lives with the researched in their community, or partial immersion, where the researcher goes home for tea After Sara Delamont, Participatory and done with rather than to research participants Ryen argues that ethics has always been a part of ethnographic research, evidenced as a concern with field relations, representation, exploitation, alternative values etc. (Ryen, 2009:230)

10 Ethnography and Informed Consent Manipulation by researchers Gatekeepers enforcing consent (Heath et al. 2004) Participants may feel unable to withdraw, issues of politeness Not giving enough time for people to think about the research (Crow et al. 2004) Vulnerability (David et al, 2001) Covert research

11 Why written consent? Artificial, culturally inappropriate bureaucratic process? (Israel, 2004) Time, context Illiteracy Unwillingness to disclose their real name and/ or to leave a record of participation (Coomber, 2002) Formal language of Information Sheets can frighten/ alienate participants, often using patronised and insensitive language

12 Information Sheets The forms replicate ‘middle-class manners’ that may patronise, distance or alienate others (Ryen, 2009: 234) Issues of risk are dealt with in a way that magnifies ‘potential risks’ and heighten anxieties Volume of paper and burden on researcher and researched, and undermine rather than create trust (Homan, 1991) Over disclosure ‘zones of comprehension and zones of privacy’ (Stake and Jegathessan, 2006)

13 Observation Impossibility of informing everyone about the research Repeat visits mean repeat consent? Some people may not be able to consent repeatedly, (Lawton, 2001) Need to observe ‘natural’ behaviours

14 Review of social science literature: Not a straightforward process Situated research ethics mean researchers need to consider a range of issues: format, style, timing and the form of consent; the level of consent; the context; the researcher’s ethical orientation. (Wiles R, Heath S, Crow G, et al. 2004)

15 Why we should continue to talk about ethics: In a fast moving research environment, new situations arise and new forms of research emerge which cannot all be covered within this document. We encourage the research community to share their guidance, experience and solutions to ethical dilemmas to facilitate innovative research. Research Ethics Committees in institutions have an important role in facilitating ethical research by sharing their expertise. Economic and Social Science Research Council. (2012). Framework for research ethics Retrieved 25th January, 2012, from Ethics_tcm pdf Ethics_tcm pdf


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