We need to justify our use of a vulnerable population.
I have heard this reason from a number of researchers, often ones who would very much like to include LGBTQ individuals in their sample, but who feel that their hands are tied in doing so because their institution or review board (or both) require that they justify the use of any subjects belonging to a ‘vulnerable population.‘ Some researchers, including those sitting on Research Ethics Boards (REBs) or Institutional Review Boards (IRBs), believe that sexual and gender minorities constitute a vulnerable population, and therefore require researchers to demonstrate a ‘justified’ reason for studying the members of this population, such as having a research question that specifically addresses some aspect of LGBTQ identity or experience. I believe this to be a gross misinterpretation of the ethical aim of protecting vulnerable populations. Just think about it for a moment and ask yourself what specifically makes LGBTQ individuals vulnerable in today’s society? What are they vulnerable to? For the most part, they are ‘vulnerable’ to discrimination, social exclusion, ‘being othered,’ and facing heterosexism and heteronormativity on a day-to-day basis. Now ask yourself which of the following recruitment flyers is more likely to perpetuate these experiences of ‘vulnerability:
Which of these recruitment flyers is more likely to perpetuate experiences of 'vulnerability' among LGBTQ participants?
It is not uncommon to see posters like these around a University campus. Even if a student does not qualify for your study, or does not choose to participate in a particular study, they may still pass your poster every day, and if it happens to be the poster on the left, it will probably just blend in the many other aspects of their life that remind them that they are somehow ‘different‘ or living on the outskirts of society - in one way or another. At this point, a policy aimed at protecting ‘vulnerable populations‘ has essentially just underlined that vulnerability and added to the day-to-day experiences of heterosexism and social exclusion experienced by many LGBTQ individuals.
So what if you just don’t put the exclusionary criteria on your poster? That would make it less offensive, right? Maybe. Maybe not. While researching for this post I came across at study on relationships that made no mention of needing to be in a heterosexual coupling. I read the informed consent, and it appeared that I was an eligible participant, so I agreed and proceeded to the survey. I answered a few brief ‘eligibility screening‘ questions on the first page. What year was I born? Can I read and write in English? Am I in a monogamous relationship? Have I been in the relationship for at least 1 year? Is it a heterosexual relationship > 1 year? I answered all of the questions, and on the next page of the survey I received this message.
Now, just to be sure, I went back and answered the screening questions a number of times, and the reason I was ineligible for the study was because I did not report being in a heterosexual relationship. So now, not only have I been excluded (or rejected?) I’ve also wasted 5 minutes of my life that I’ll never get back because the researchers couldn’t be bothered to place their exclusionary criteria in their advertisement or informed consent. Perhaps they somehow sensed that it was wrong to say “heterosexuals only” so they thought they would dilute the message by just giving me a generic disqualification message. Plain and simple, this doesn’t work. When given 6 questions to measure eligibility, chances are the participant will know which one lead to their exclusion.
“But it isn’t up to me! My hands are tied!” So now we understand that excluding LGBTQ participants can increase their sense of social exclusion, but that still doesn’t tell us much about what we can do to solve the problem. A researcher is bound by his or her institution and ethics review board with respect to getting their study approved. Without ethical approval, an academic study involving human subjects just does not happen. There are two common time-points where the exclusion decision can occur.
- As a researcher, you decide that LGBTQ individuals constitute a vulnerable population and you know that you’ll need to justify their inclusion on your ethics application, so you decide not to include them and avoid having to make that justification.
- You submit your ethics application and you include LGBTQ individuals as part of your sample and the review board decides that you do not have sufficient ‘justification‘ for including them, based on their ‘vulnerable population‘ status.
The first of these is the easiest to reverse. Simply avoid this thought process. Include LGBTQ individuals in your design, submit your ethics application and wait to see whether your review board raises an issue. As issues concerning heterosexist bias in research and the need to be inclusive become more well understood, chances are you may not receive an objection at all. At most institutions, ethical review boards are made up of other researchers from the university. You yourself may end up serving a term or two on the board. As such, you never really know what will get approved and what might raise a red flag, as different people will object to different things.
So let’s assume that you have at least tried to include LGBTQ individuals in your study and now you are faced with an objection from your review board (or, if you are a graduate student, perhaps your supervisor has stopped you in your tracks before even submitting your ethics application). Luckily, there are a number of resources that will back you up in making your argument for the inclusion of LGBTQ individuals, even when their specific identity or experiences are not a specific element of your research question.
- Check the definition of “Vulnerable Populations” at your institution or the grant agency that is funding your research. The chances are very high that LGBTQ individuals are not specifically mentioned as being one of the targeted groups for protection. For example, the Health Canada Research Ethics Board does not include LGBTQ individuals in their definition of “Vulnerable Populations”. If you find that your institution or granting agency doesn’t include LGBTQ individuals as a vulnerable population, then you are likely not obligated to report that your study will be using any vulnerable populations and you may not need to specifically discuss your inclusion of LGBTQ individuals (at least not in the section of the application related to vulnerable populations). If this is the case, then it will be your sample description and study materials that will evidence their inclusion - i.e. questions about sexual orientation, sexual identity, and modified questionnaires based on participant responses.
- If LGBTQ people are defined as a vulnerable population by your institution or granting agency, or if you know that your institution interprets the definition to include them (even if not explicitly stated) then you can try making the argument that they SHOULD NOT be treated as a vulnerable population, especially if your study presents low or no greater risk to LGBTQ participants as a function of their sexual or gender identity. Make the point that exclusion exacerbates any vulnerability far more than inclusion.
- Still having troubles? Well then, bring out the big guns. Article 4.1 of the Tri-Council Policy Statement: Ethical Conduct for Research Involving Humans states that:
In other words, this document informs researchers that they should err on the side of inclusion, not exclusion. This document specifically addresses the concept of ‘unfair exclusion‘ and discusses the historical exclusion of specific groups that has served only to weaken our knowledge base and create significant gaps in the literature. This applies directly to LGBTQ individuals, as they have historically been excluded from research, including relationships and sexuality research, and as a result LGBTQ psychologists are currently playing ‘catch-up‘ in order to evaluate past research findings on heterosexuals within the context of LGBTQ identities and experiences. Use these documents: Attach copies of the specific articles that are relevant to your study and include them with your ethics application.
Above all, remember that the role of your REB or IRB is to protect the interests of your participants, and without participants, you would not be able to run your studies. Thus, when you feel that you are at your wits end and that their true raison d’être is to wreck havoc and create endless frustration in your life, remind yourself that if they have your participants’ best interests at heart and if you also have your participants’ best interests at heart, then there must be away of finding common ground on which you can both agree that your participants will be protected. It may help to remind them that they should not only be concerned with the participants who eventually make it into your study, but also the individuals who may come in contact with your study and suffer the consequences of exclusion should they not be eligible to participate. If you are having a specific problem with getting your study approved based on its inclusion of LGBTQ participants, I offer consulting services that include assisting with ethics applications that relate to the inclusion of LGBTQ participants or the use of online research methods.