Research Ethics from Two Perspectives: The Researcher and The Researched

1. Dr Sue Spiers Research Ethics from Two Perspectives: The Researcher and The Researched

2. Aim The Thinker by Rodin

3. Why Research?

4. Ethics – moral principles that govern a person's behaviour or the conducting of an activity (Oxford Dictionaries) Activity = Research

5. Potted History of Research Ethics • 1948 – Nuremberg Code • 1950s – Thalidomide • 1932 to 1972 – Tuskegee Syphilis Study • 1964 – Declaration of Helsinki • Social or scientific value and validity • Fair participant selection • Proportionate risk • Informed consent and respect

6. And on …….. • 1966 – Establishment of first REC • 1979 – Belmont Report • 1998 – Data Protection Act • 2004 – EU Clinical Trials Directive • 2004 – Human Tissue Act • 2005 – Mental Capacity Act

7. What does this have to do with me or my research?

8. Medical based history has formed the basis for today’s ethical principles in research across all disciplines. • NERC Ethics Policy • ESRC Framework for Research Ethics • British Psychological Society Code of Ethical Principles and Conduct • Social Care Research Ethics Panel • Marketing Research Society Code of Conduct Grounded on the fundamental principles of the Declaration of Helsinki

9. Research Ethics are….. • guiding moral principles • fit into an overarching research framework which encompasses integrity, governance and management • (should) inform research design, conduct, analysis, dissemination and implementation

10. What does ethics do? • Protect the safety, dignity and rights of participants in research • Provides assurance of good quality research being conducted within an evidence base and for the benefit of society • Protects all stakeholders • Participants • Researcher • Sponsor / Funder • Host Institution / Employer • Professional Bodies • Public

11. The Research Ethics Committee • A multi-disciplinary group • Provide advice and guidance • Ensure that proposed research activity meets recognised ethical standards

12. Role of the Ethics Committee: What will they ask? • Why? • How? • Who? • What?

13. The Research Ethics Committee: What are they concerned about? • Value and validity • Information • Consent • Rights • Risk

14. Ethical Balance / Ethical Dilemmas • Research is, by its very nature, pushing the boundaries into something new; don’t always know what is going to work; challenging existing evidence base; innovative • Balance between needs of researchers and the rights / expectations of participants

15. Risk, Research and Ethics • Risk (noun)a situation involving exposure to danger (Oxford Dictionaries) • Potential physical or psychological harm, discomfort or stress to human participants (medical) • Risk to a subject’s personal social standing, privacy, personal values and beliefs, their links to family and the wider community, and their position within occupational settings, as well as the adverse effects of revealing information that relates to illegal, sexual or deviant behaviour (social)

16. Risk and Ethical Review • The benefits of undertaking the research outweigh the risk of participating in the research • Whose benefit / Whose risk? • “….may only be conducted if the importance of the objective outweighs the inherent risks and burdens to the research subjects” (Declaration of Helsinki) • “Proposals should be considered in the context of risk to the researched and researchers.” (ESRC) • Short-term risks balanced against longer-term benefits (economic, political, cultural disadvantage and exploitation)

17. Proportionate Risk • Risks are recognised, assessed and managed • Risks to researcher and the participant • Short-term and long-term risks / benefits • Participants are fully informed of any risks – part of informed consent! Peligro Indefinido = Undefined danger

18. Informed Consent • Central to ethical research practice • Ensures that those who participate in research understand exactly what the research involves for them • Ongoing agreement by a person to participate after the risks and benefits have been explained to them • Ensures that people are not deceived or coerced into participating in research

19. What is an informed participant? • Understands: • Why? • What? • How?

20. Tensions • Clinical trial – control group / phase 1 • Psychological research – deception • Observational research – covert surveillance • Inclusivity

21. Psychological Research In a study examining the relationship between performance and defensiveness participants were given false feedback on a test of intellectual ability and were told that their scores were well above or well below average. After the false feedback participants completed measures of defensiveness so that researchers could determine if failure makes people more defensive.

22. Psychological Research “Avoid intentional deception of clients unless: (a) deception is necessary in exceptional circumstances to preserve the integrity of research or the efficacy of professional services; (b) any additional safeguards required for the preservation of client welfare are specifically considered; and (c) the nature of the deception is disclosed to clients at the earliest feasible opportunity.” (section 1.3 BPS Code of Conduct, Ethical Principles and Guidelines)

23. Observational Research • “observational research is only acceptable in situations where those observed would expect to be observed by strangers” (section 9.1 BPS Code of Conduct, Ethical Principles and Guidelines) • Covert vs. Overt observation • Cultural issues • Privacy • Data protection • Data use • Data management

24. Covert research “may be undertaken when it may provide unique forms of evidence or where overt observation might alter the phenomenon being studied. The broad principle should be that covert research must not be undertaken lightly or routinely. It is only justified if important issues are being addressed and if matters of social significance which cannot be uncovered in other ways are likely to be discovered. Normally, social scientists should ensure that research participants are aware of and consent to arrangements made with regard to the management and security of data, the preservation of anonymity, and any risk that might arise during or beyond the project itself, and how these might be minimised or avoided.” (ESRC Research Ethics Framework)

25. Practitioner vs Researcher • Coercion • Dependent relationships • Vulnerability

26. Data Collection • Privacy • Right of an individual to control what other people know about them. • Assurance that sensitive information will not be disclosed without specific approval • Informed consent necessary when using information that an individual normally controls eg information they have volunteered to disclose

27. Confidentiality and Anonymity • Confidentiality • Guarantee that identifying information will not be made available to anyone who is not directly involved in the study • Anonymity • Participant unidentified throughout the study • Public • Other participants • Researchers

28. Data Management • Data should be presented in such a way that respondents should be able to recognise themselves while the reader should not be able to identify them • Allows freedom of speech • Ethical and legal implications • Data Protection Act 1998

29. Data Protection Act 1998 • Fairly and lawfully processed • Processed for specific purposes • Adequate, relevant and not excessive • Accurate and up-to-date • Not kept longer than necessary • Processed in line with participants’ rights • Kept secure • Not transferred to countries with in-adequate protection for data

30. And finally ……. “Simply ‘knowing about’ the issues of values and ethics is not a sufficient basis on which to conduct research, they need to form part of the research practice itself” May, T. (2001) Social Research, 3rd Edition, Buckingham, Open University Press