lots of questions to get you thinking Help you think about things rather than provide answers Raise your expectations of researchers and ethics committees Direct you to useful resources (and identify missing resources) Think about what is different/unique for LGBTI research ethics and what isn't - and why What are your aims?
Navigating formal procedural ethics review (10mins) Researchers working with communities (15mins) Communities working with researchers (15mins) Dealing with ethically important moments during your research (20mins) Wrapping up (20mins)
about? Distinguishing acceptable practice from unacceptable practice Not simply common sense Researchers, research institutions, funders, community organisations and community members may have different ideas about what is un/acceptable The partner in any LGBTIQ research project need to develop shared ethical norms around research practice We need regular conversations about what we believe is un/acceptable We need space to reflect together on ethical dilemmas we face We need space to reflect together when things go wrong
review? National Statement on Ethical Conduct in Research Involving Humans guides how research is conducted in Australia. It is for “any researcher conducting research with human participants; any member of an ethical review body reviewing that research; those involved in research governance; and potential research participants.” NS sets out values and principles that apply to all human research: respect for human beings, research merit and integrity, justice, and beneficence Human Research Ethics Committees (HRECs) perform ethical oversight of research involving humans 200+ HRECs in universities, research institutions, hospitals, health departments, government departments, not for profits and for profit organisations.
review a good thing? Seek to ensure: research meets relevant scholarly or scientific standards research is “ethically acceptable and in accordance with relevant standards and guidelines” (NS) those conducting research are either adequately experienced and qualified, or supervised + understand the need to assess risks to their own safety and that of participants BEFORE THEY CONDUCT THE RESEARCH there is a process for monitoring and addressing complaints Protects ”the mental and physical welfare, rights, dignity and safety of human participants in research at all times” (USyd) Provides a mechanism to shape research practice
to be reviewed? Mandated for commonwealth funded research (ARC, NHMRC, etc) and a lot of other research funders Mandated for Australian university – including student research – research institution, public health care, and government departments. Mandated by many NGOs and private health care providers. Highly recommended if you plan to publish via a peer reviewed scientific journal. Moral obligation to disseminate?
LGBTIQ people/communities Submit your research for review – don’t assume they have relevant expertise. Explain what “respect for human beings, research merit and integrity, justice, and beneficence” mean for the population you are engaging with. What might be different? Complain about research you encounter that you think gets things wrong for LGBTIQ people/communities. Use the NS to explain why the research is problematic. Sit on HREC or offer your expertise on relevant proposals.
understand about LGBTIQ people/communities? Confidentiality: Risk if identified + Small community increase possibility of identification Need for culturally safe research staff / recruiters / data collectors Inclusive language + questions; experience vs desire vs identity labels Need for specific appropriate and safe support services The trauma experienced by many LGBTIQ people and the potential impact research studies may have on these trauma histories How research findings or interpretations may stigmatise, pathologise or be used to damage community Whether the research will improve the lives of LGBTIQ people/communities?
people Importance of doing research with young LBGTIQ+ people to find out about issues they may be facing. Difficulty gaining consent for young LGBTIQ+ people Lack awareness of potential ramifications of gaining parental consent for young people (or importance of also gaining assent). Different requirements depending on research design: e.g. Anonymous online survey; school setting (additional ethics) Differences between research that targets whole populations of young people versus self-selecting LGBTIQ+ young people Not understanding the word “ally”. Perception that LGBTIQ+ young people are “hyper” sexual, sexually active under the age of consent, may disclose sexual activity to researchers.
ask Are my research questions worth asking and what do they add to existing knowledge? Do my research goals align with the aims/objectives of my research partner/site? Do I have a good knowledge of the community I intend to work with? How will the communities involved benefit? Are the methods I intend to use appropriate for the research I am conducting? Am I confident that I have the necessary skills for this piece of research? If the research is funded, what are the expectations of the funder? Please see: LGBT Foundation (N.D.) Ethical Research: Good Practice Guide to Researching LGBT Communities and Issues, UK: http://lgbtfoundationarchive.uk/assets/_files/documents/may_17/FENT__1493809742_LGBT_Foundation_Guide_to_Ethic.pdf
ask 2 How informed and aware are the research staff? How can I fully inform participants about my research topic? How might other factors affect my ability to fully inform participants? If the research is funded, what implications might this have for informing participants? How might my research topic affect confidentiality and anonymity? How might my research methods affect confidentiality and anonymity? Please see: LGBT Foundation (N.D.) Ethical Research: Good Practice Guide to Researching LGBT Communities and Issues, UK: http://lgbtfoundationarchive.uk/assets/_files/documents/may_17/FENT__1493809742_LGBT_Foundation_Guide_to_Ethic.pdf
ask 3 How can research be inclusive of LGBTIQ+ communities? How are researchers ensuring visibility in data (i.e. Sexual Orientation, Gender Identity, Intersex Rights: SOGI questions)? How are researchers ensuring that relevant sub-communities are being consulted and represented in data? Who are the “consultation gatekeepers”? Organisations working with LGBTIQ people Individuals with expert knowledge How much consultation is enough consultation?
Early consultation with a variety of community orgs (depending on your target demographic). Meaningful engagement through active participation on study teams where possible or development of advisory groups. Remuneration for participant’s time when possible. Willingness to accept feedback and modify study protocols within reason. Provide comprehensive list of supports that are relevant to target communities. Evidence provided of research credentials to ensure that the data shared will lead to research that will produce results for communities. Engagement of community orgs/individuals in the development of funding proposals. Accessible/user friendly research outputs (factsheets, short reports, executive summaries, news articles, etc.)
wrong Who are L-G-B-T-I-Q people? SOGI questions. What is consultation? What is the role of community based ethics committees? What LGBTI specific and/or LGBTI inclusive support services exist? The diversity within LGBTIQ communities. The length of surveys. The power of online recruitment and data collection. How to build capacity at community orgs. The frequency/volume of research requests received by communities and community orgs. Questions that can offend our communities about our bodies, expectations around experiences of violence, abuse, sex, stigma and discrimination.
questions should be: clear, specific, well-defined. Are these questions of concern to LGBTIQ communities? Are your project objectives/outcomes measurable? What qualitative and quantitative methods will you employ to understand your findings/data? Evaluating a program or intervention: appropriate research design; create evidence- base; feedback findings to key-stakeholders, research participants and communities. Build evaluation into your research (program/intervention) from the outset. Include resources (people/money) to undertake evaluation. What information do stakeholders need or hope to gain from the research? (Each evaluation should have a primary purpose). What requirements does the evaluation need to fulfil? (Do funders have specific requirements?)
you do a process evaluation, outcome evaluation or both? Process evaluation. Goal: inform changes/improvement in program/intervention’s operations. Can be mixed methods; documents what program/intervention is doing, how consistently & to what extent program/intervention is being implemented as intended? Outcome evaluation. Goal: identify results or effects of program/intervention. May measure changes in knowledge, attitudes, behaviour, conditions resulting from program/intervention. May include comparison group. Generally includes quant data; can be mixed methods. What is the relationship between evaluating a program/intervention and ethics?
a KT plan with your key stakeholders. How will research findings be disseminated beyond academic, peer reviewed publication? Build KT into your research from the outset so that it is embedded in the design, timeline and has a budget. Who are your project partners? What are their roles? Who is you KT audience? (e.g. the public, or decision-makers?) What are your KT goals for each audience (awareness, behaviour change, knowledge, practice change etc.) What KT strategies will you use (educational outreach, workshops, mass media campaign, educational materials, press release, webinar)? How will you measure impact? (policy change, knowledge change, attitude change, systems change etc.)
Ensure that all studies you endorse have formal ethics approval For LGBTI specific ethics review Connect with community based ethics committees (VAC, ACON) or Consider starting a committee at your organisation Partner with other organisations to create a committee Form relationships with research partners to support you in assessing research requests you may receive Partner with researchers when they are planning research to ensure that your perspectives and needs can be incorporated into a research plan
building their capacity Credibility Researcher academic record Community identified researchers or researchers with a lived experience Co-create research Collect and disseminate data together Capacity Include new research partners in programmatic work Encourage new partners to present their previous work to staff Invite research partners to be active members/participants in your organisation and at events
Research has its limitations It is often specific, where community needs and issues are complex Research timeframes can be lengthy Innovation often occurs at the community level and provides fantastic research opportunities Consider what is already happening on the ground that can be researched Community control and ownership of a project can often be stronger in these cases Research projects are opportunities for community members and organizations to build their own research capacity and networks Despite the time commitment, participation on these projects builds skills and demystifies the research process Community orgs and individuals can be encouraged to be on research teams and be active participants in the research decision making process
LGBTIQ samples within larger programs of research We cannot compromise on respectful and inclusive visibility in data (i.e. appropriate SOGI questions) Community orgs, LGBTIQ researchers and other key individuals with community expertise can support these studies to make findings more relevant and impactful Important to understand the LGBTIQ health experience within the context of the broader population and intersecting health determinants (i.e. ethnicity, education, location, income etc…) How can the LGBTIQ health sector/communities encourage more mainstream inclusion? Census inclusion Encouraging early career researchers (both LGBTIQ and non-LGBTIQ) to explore LGBTIQ health issues
community working with researchers Appropriately referencing research partner’s work Managing expectations about what researchers can do for your organisations. Understanding the constraints in which researchers work (timelines, budgets, ethical, imperatives). Understanding differences between advocacy and research. Considerations of political climate, key decision-making, and potential risk to researchers. Don’t commit/agree to support a research study if you cannot properly resource your participation
ethics in process / ethics in practice / micro ethics There are ethical considerations throughout the research process. Research ethics does not belong to ethics review committees, it belongs to us all! How do you deal with the day to day issues that arise in the practice of doing research, issues with real ramifications? How do you respond in the moment?
Pick one of the provided cases or something from your own experience and discuss: What are the ethically important points in this account? What has gone wrong? What could have been anticipated? What strategies could they have employed? What do they do now?
is the longest running and only continuous survey of the health of LBQ women; runs via a survey every two years during Sydney Mardi Gras and Perth Pride seasons; the project is an ACON-Sydney University collaboration. Problem: Social media commentary and direct email from community: – SWASH does not include heterosexual transwomen and it should – multiple survey questions do not allow participants with non-binary partners to record their experience – The questions do not reflect “my and my friends” priorities – SWASH is focused on risk behaviour, with no opportunity to capture positives. What do the research team / community organisation do?
is the longest running and only continuous survey of the health of LBQ women; runs via a survey every two years during Sydney Mardi Gras and Perth Pride seasons; the project is an ACON-Sydney University collaboration. Problem: Community recruiters were in an entertainment to collect data. Someone on stage began to make fun of the survey, reading through the questions, and then making fun of the health issues the survey covered. No one intervened (could / should they?). Audience members who had completed the survey approached the research team and expressed distress (as did some of the community recruiters). What do the research team / community organisation do?
prestigious researcher seeks ethical approval from a community ethics committee to conduct an online health survey LGBTI people. The committee asks the researcher to change their sexuality and gender indicators to ensure all LGBTI people are visible in a project that claims to be inclusive. Problem: The researcher refuses to change their sexuality and gender indicators and moves forward with promotion online on their own for the survey. They use your logo in promotional material and post links to their survey on your social media pages. Community members contact you complaining that your organisation is promoting research that claims to be LGBTI but doesn’t include them as their SOGI questions are insulting. What does the community organisation do?
are the lead researcher on a team that has authored a successful research report, after partnership with an LGBTIQ+ community organisation. You have been asked to present research recommendations in federal parliament in a few weeks. You have sent a draft of the recommendations, after consulting with LGBTIQ+ communities, to the funding body. Problem: The external funding body sends back a draft of the recommendations that have been completely changed the night before you are to present in federal parliament. The reviewed recommendations now do not reflect consultations and expectations of LGBTIQ communities. What does researcher/research team do?
are a researcher on a project focused on including LGBTIQ+ young people in school settings. The project is externally funded using government funding, administered by a NGO that is focused on youth health/wellbeing. Problem: Six months into the project, the socio-political climate in Australia changes. Some powerful stakeholders do not want LGBTIQ+ inclusion to be discussed in school settings. While you have gained ethics permission from your university to conduct the research and you have consulted with community, you are unable to obtain ethical permission to enter schools in many Australian jurisdictions. A newspaper article is written about your research team undermining the research and your reputation. What does researcher/research team do?
Anticipate – What could go wrong? What are key issues for this population / topic? Talk to people on the ground. Training – Who needs it? What does it need to cover? Role play/scenarios. Plan – Your response, formal and informal support. Communicate – Have open communication channels with all the stakeholders for when things go wrong.
the specific / important / unique research ethics issues facing LGBTIQ people and communities? What do communities and researchers need, to better understand these issues and mitigate as best as possible? Where can you get support, training, guidance?
National Statement on Ethical Conduct in Human Research https://www.nhmrc.gov.au/book/national-statement-ethical-conduct-human-research Setting up a HREC https://www.nhmrc.gov.au/health-ethics/human-research-ethics-committees-hrecs Australasian Research Ethics Consultancy (great library, blogs, $advice) https://ahrecs.com/ahresources Research Ethics Application Database (open access repository of research ethics applications) https://tread.tghn.org/ LGBTI community-based ethical review: https://www.acon.org.au/what-we-are-here-for/policy-research/#acon-ethics-committee https://vac.org.au/about/research Including Intersex in Research Studies and Surveys: https://ihra.org.au/20042/on-requests-for-research/ LGBT Foundation (N.D.) Ethical Research: Good Practice Guide to Researching LGBT Communities and Issues, UK: http://lgbtfoundationarchive.uk/assets/_files/documents/may_17/FENT__1493809742_LGBT_Foundation_Guide_to_Ethic.pdf GENERIC RESEARCH ETHICS TRAINING free/online https://www.mq.edu.au/ethics_training/index.php free/online https://www.uow.edu.au/research/rso/ethics/human/training/ $ Intensive Research Ethics Course (5 days) $ HREC Essentials Training Course (VET accredited) International Global Health Network Research Ethics Online Training https://globalhealthtrainingcentre.tghn.org/elearning/research-ethics/
Sydney University/University of Sydney collaboration: research with all young people] Which one of these statements best describes your feelings at the moment? –I am attracted only to people of a different sex/gender –I am attracted only to people of my own sex/gender –I am attracted to people of more than one sex/gender –I am not sure to whom I am attracted –I don't feel attracted to anyone 4
Sydney University/University of Sydney collaboration: research with all young people] Which term would you use to describe your sexuality? –Straight (Heterosexual) –Gay –Lesbian –Bisexual –Pansexual –Queer –Questioning your sexuality –Asexual –I don’t know –Something not listed here [Open-ended space to write] 4
[ACON] What is your current gender? –Male –Female –Non-binary –Different identity (please state) What gender were you assigned at birth? –Male –Female 4
[Western Sydney University/University of Sydney collaboration: research with all young people] How would you currently describe your gender identity? –Female/girl –Male/boy –Genderqueer –Genderfluid –Agender/ no gender –Non-binary –Transgender male –Transgender female –Other, please specify [Insert text box] –Unsure 4
Are you intersex? Yes / No / Prefer not to say [OII/Intersex Human Rights Australia] Intersex is a term for people born with atypical physical sex characteristics. There are many different intersex traits or variations. Do you have an intersex variation? Yes / No Were you born with a variation of sex characteristics (this is sometimes called intersex)? Yes / No 4
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