1. Institutional data, headers etc
Building an ethical research culture
Institutional data, headers etc
A presentation by deputy presiding officer of the CSU HREC
Dr Asim Qayyum

2. Why review human research

3. What does the word ETHICS mean to you?
Are people blind to ethical concerns?
Have we always been blind to ethical concerns?
In the comments, what does ethics mean to you?
Thumbs up or down – are people blind to ….
Thumbs up or down – do you think we’ve been blind to ….

4. Why do we review ethics?
To consider ethical issues that arise in a specific enquiry scenario
To respect and protect those who assist us in our research projects
To ensure integrity of data
To think ethically about unique issues that emerge through research
To consider animals and the environment
To consider the vicarious liability of the institution we work for
In the comment box, let me know some thoughts about why you think we need to review ethics?

5. Individual researcher’s responsibilities
Good research and good ethics go together
Investigators have direct and ultimate responsibility for all matters relating to their research
MUST obtain written approval before commencing each project
MUST comply with directions of the Ethics Committee

6. Individual researcher’s responsibilities
MUST comply with the appropriate Code of Practice
Must consider other requirements, e.g. Working with Children Check
Should consider dependency issues:
staff using students as participants;
practitioner versus researcher

7. Ethics sharpens your research project
Rigor and validity enhanced by the processes
Helps you develop analytical skills
Learn to map the geography of your research plan – all ducks line up
Every person-facing event (who) in your plan appears in your Human Research Ethics Application (HREA)
Each stage (where and why) considers the ethical implications
You demonstrate that each strategy and idea (how) affecting participants has been addressed in your HREA
Ask yourself - Who, where, why and how

8. The burgeoning world of ethics
Ethical imperialism – or increasing complexity in research methodologies and possibilities
Vulnerable people, marginalised groups,
Online content, social media, anonymous surveys, chat rooms, survey monkey, use of employer time and resources
Classrooms, sporting groups, entering homes, home offices and studios

9. Principles underpinning the NS
Tolerate and not resist ambiguity, disagreement, re- direction

10. The 4 values of the National Statement
Beneficence (NS 1.6 – 1.9)
Includes Risks:
Justified by benefits
Minimised
Clarified to participants
Respect (NS 1.10 – 1.13)
includes:
Welfare
Confidentiality, privacy
Consent – waiver, deception, coercion
Form/s of consent
Information Sheet/s
Research Merit and Integrity (NS 1.1 – 1.3)
includes:
Evaluation of scientific or academic merit
Genuine search for truth
Dissemination strategies
Justice (NS 1.4 – 1.5)
Recruitment
Benefits of participation
Feedback to participants
In the comments, what does ethics mean to you?
Thumbs up or down – are people blind to ….
Thumbs up or down – do you think we’ve been blind to ….

11. Assessment of risk involves:
NS, Chapter 2.1, Risk and Benefit [quoted text is from pp. 12 – 14 of the NS]
Risk = likelihood of harm, discomfort and/or inconvenience + severity and consequences of harm, discomfort and/or inconvenience
Assessment of risk involves:
Identifying, gauging probability and severity, management and minimisation,
Must be justified by the potential benefits of the research;
Engagement with researchers, institutions and HRECS.

12. Components of an ethics application:
A Project Description [template available]
A completed HREA
An Information Sheet/s
A Consent Form/s Pro formas for Information Sheets and Consent Forms
Copies of any advertisements, recruitment posters/ s/letters, etc.
Copies of interview questions, or of the survey/questionnaire to be used

13. Ethical review of research at CSU
One HREC, two fully-constituted panels; one Presiding Officer, two Deputy Presiding Officers.
All applications for ethical review should be submitted to the CSU Human Research Ethics Committee (HREC). [No minimal risk review pathway.]
The HREC meets every two weeks – meeting dates and agenda closing dates

14. The HREA review process
Researchers may
have their application approved at the meeting
be asked to resubmit
have their application approved pending satisfactory responses to questions/ comments, with members designated to check (outside meeting)
Have their research rejected
Approval is granted for the length of the research, subject to annual review
If research is varied the variation needs to be approved by the HREC
Researchers submit final reports

15. Ethical review of research at CSU
Data collection must not commence until HREC approval has been received.
Research activity may constitute misconduct if not conducted within boundaries approved by CSU HREC.
Retrospective approval CANNOT be given by a HREC.
Lots of information

16. Ethical review of research at CSU
Hints and Tips:
Check that information is consistent across all documents before submission.
Where projects involve different groups of participants and they are being asked to do different things, there should be a different Information Sheet and Consent Form for each group.
Where projects involve collecting data from someone in their capacity as an employee of X, permission from X must be obtained before seeking consent from the employees (and evidence of that permission submitted with the ethics application).

17. Ethical research with Indigenous communities
Principles of ethical research
Principle 1: Recognition of the diversity and uniqueness of peoples, as well as of individuals, is essential.
Principle 2: The rights of Indigenous peoples to self-determination must be recognised.
Principle 3: The rights of Indigenous peoples to their intangible heritage must be recognised.
Principle 4: Rights in the traditional knowledge and traditional cultural expressions of Indigenous peoples must be respected, protected and maintained.
Principle 5: Indigenous knowledge, practices and innovations must be respected, protected and maintained.
Principle 6: Consultation, negotiation and free, prior and informed consent are the foundations for research with or about Indigenous peoples.

18. Ethical research with Indigenous communities
Principle 7: Responsibility for consultation and negotiation is ongoing. Principle 8: Consultation and negotiation should achieve mutual understanding about the proposed research. Principle 9: Negotiation should result in a formal agreement for the conduct of a research project. Principle 10: Indigenous people have the right to full participation appropriate to their skills and experiences in research projects and processes. Principle 11: Indigenous people involved in research, or who may be affected by research, should benefit from, and not be disadvantaged by, the research project. Principle 12: Research outcomes should include specific results that respond to the needs and interests of Indigenous people. Principle 13: Plans should be agreed for managing use

19. Key Contacts
Dr Anna Corbo Crehan (Presiding Officer) Dr Ann Lazarsfeld-Jensen (Deputy Presiding Officer) Dr Asim Qayyum (Deputy Presiding Officer) Ms Kate Organ (Ethics and Compliance Unit) Ms Ellen Hannigan (HREC Governance Officer)