ETHICS: How to Prepare a Strong Application Helen Gremillion (and Geoff Bridgman) Department of Social Practice Unitec

1. ETHICS: How to Prepare a Strong Application Helen Gremillion (and Geoff Bridgman) Department of Social Practice Unitec Institute of Technology 6 May, 2014

2. Why conduct ethically-sound research? • Moral obligation • Credibility • Legal requirements

3. Why conduct ethically sound research? With ethics approval: • Secure legal position (researcher and Unitec indemnified) • ACC and professional coverage • Satisfaction of dissertation/thesis requirements • Ability to publish

4. ‘Unethical’ examples • “The Unfortunate Experiment” (Cartwright, National Women’s Hospital, 1965-1974). Delay in treatment of women diagnosed with cervical cancer or a pre-cancerous lesion. 1/3 developed invasive cancer, 8 died. • Milgram (electric shock: Yale University, 1963)

5. Ethical considerations apply when... Humans or animals used as subjects, i.e. with: • questionnaires, interviews, focus groups • clinical trials (medical intervention) • some observational studies • bodily tissues and fluids • treatments or exercises applied • genetic modification • use of personal, non-public information • using property/material which is culturally, historically or spiritually significant

6. Principles of ethically sound research • informed and voluntary consent • doesn’t breach privacy • physical and emotional harm minimisation • cultural and social sensitivity • limitation of deception • respects intellectual and cultural property ownership • avoids conflicts of interest • adequate research design to meet objectives

7. Before Collecting Data.... PRIOR APPROVAL must be SOUGHT and GAINED before research can commence

8. Ethical Dilemmas • BSocP students want to interview past or present marijuana smokers to find out what safe practices they typically use. • A teacher wants to run a focus group with her students to explore the effectiveness of different teaching strategies • A counsellor wants to use session transcripts (made for the purpose of supervision) in a project that evaluates the effectiveness of counselling • A group of women researchers want to interview men about fathering • A group of Pakeha researchers want to do research on Māori Health practices

10. General ethical issues: • Informed consent, and ability to withdraw involvement/data • Power issues: e.g. teacher-student, doctor-patient, principal-teacher. • Vulnerable subjects: e.g. children • Anonymity and/or confidentiality • ‘Lay’ language and well-written documents, particularly those distributed to public

11. Specific but common ethical issues • Cultural awareness • Sample size (research design adequacy) • Recruiting participants (bias/power issues) • Sensitive questions: e.g. have you ever broken the law? Are you using drugs? What is your sexual orientation? • Conflicts of interest (e.g. researcher benefits, or could be seen to benefit, from a particular outcome) • Overseas research (e.g. researcher safety)

12. What’s included in an application • Correct and current application form • Information sheet(s) (unless anonymous survey) • Consent form(s) (unless anonymous survey) • Questionnaire, interview schedule. If anonymous survey, basic information about the purpose of the study and anonymity at start • Institutional permission if relevant • Any other supporting documentation

13. Informed and Voluntary Consent • Information sheet and consent form: in the participants’ language. • No inducements that will influence the voluntary nature of participation • Consideration of who will recruit and who will interview (e.g.)

14. Information Sheets - 1 • what the research is about • what they are being asked to do, including time commitments and venue info • what the likely consequences are for them should they participate • that there are no disadvantages/ penalties/adverse consequences to not participating or withdrawing from the research (and timeframe for withdrawal)

15. Information Sheets -2 • any special conditions of the research that might affect their participation – e.g. that there will be audio-taping or video-taping. Include info about transcription processes • How participants will be informed of the results of the research • how confidentiality of information will be preserved • a schedule for the destruction of personal identifying information

16. Information Sheets - 3 • The names of the researchers who will actually make direct contact with the participants • the supervisor for the project if relevant • the host institution for the research • a means (for example, a telephone number) by which participants are able to be in touch with the researchers, the supervisor and the chair of the Ethics Committee to ask further questions etc, and • the UNITEC approval statement

17. Minimisation of harm • Who can be harmed? • What kind of harm could be done by our research projects? • What measures can we take to minimise harm? • sensitive topics such as sexual practices, drug taking, or illegal activities?

18. Harm or Risks of Harm • Physical Harm. It is often the case that one must do some harm in order to bring about a greater good - sports research • Psychosocial Harm. By psychosocial harm is meant everything from the invasion of privacy and the diminution of social reputation, to the creation of enduring psychological fears and confusions. • Risk of Harm. No actual harm of any sort to participants anticipated, but the risk of some harm.

19. Cultural and social sensitivity • What defines culture? • What cultural ethical issues are present in a given research project? • What does an ethical approach to research seek to achieve with respect to culture?

20. Working with the framework of the Treaty

22. UREC ethical guidelines re. Māori • The Treaty of Waitangi • Tinorangatiratanga(sovereignty) over Māori resources;a right to a fair share of society’s benefits. Partnership, protection, participation. • Informed consent – byindividuals and organisations (whanau, hapu or iwi ) • Genuine consultation – before, during, after • Defining, designing, resolving potentially difficult issues. Maximising the benefits (including Māori researcher development). • Result dissemination/ownership of reports

23. Cultural Considerations • Involvement of particular ethnic/social groups (other than Māori)? • If specific cultural issues could surface: Does the researcher speak the language? Translation issues: info sheet, consent form, etc. Consultation: researcher’s ‘insider’ status usually not sufficient Dissemination of findings and any ongoing involvement with those consulted • Example of gender sensitivity

24. Research design adequacy • Are the aims and objectives clear, important, and consistently reflected? • Does the value, and rigour, of the project justify participants’ efforts and time? • Will the chosen methodology (including sampling) allow the necessary data to be collected? • Will the planned analysis give answers to the question asked?

25. Avoidance of conflict of interest • Are there are conflict of interest issues involving money, power, status or role? Question about any existing relationships between researcher and potential participants is key here. • What do we need to put in place to prevent, or minimise (and justify) any conflicts of interest?

27. Limitation of deception Forms of deception: are they justified? E.g.: • Concealing your hypothesis or parts of it • Not telling participants what treatment they are on

28. Respect for intellectual and cultural property ownership. • Acknowledgement of sources. • Who owns the information you collect?