Recruiting participants for sex research: How social media has broadened—and severely limited—our reach

First, though: “sex research”. What exactly is it and what do sex researchers do?

Sex research is a science. It follows the scientific method, a process for experimentation used to explore observations and answer questions. The scientific method consists of making hypotheses, deriving predictions, and carrying out experiments (or systematic, research-based observations) based on those predictions. Data are analyzed with statistical software packages, knowledge is advanced, more questions are asked, and some questions are answered so that people’s quality of life can improve. In this way, sex research follows the same steps and has similar real-world significance as other forms of scientific inquiry. Sex research, as a science, is as rigorous and serious as research in cancer or cardiovascular disease, for example. Yet, sex research is often relegated to being “fringe”—it is just not taken as seriously as other areas of research—sometimes to the point that sex researchers have difficulty getting funding for their studies or have to avoid calling themselves sex researchers in order to be taken seriously. Why? Because there is still a lot of stigma attached to the word “sex”, unfortunately—even when porn is freely available to anyone with an Internet connection, and even when sex is used in advertising to sell things. Somehow, it is ok to capitalize on sex, but studying it is “weird”.

Let’s talk a little about what sex researchers do. Sex researchers study numerous aspects of sexuality. It is a widespread field of study; the science of sex research can vary from studying sexual behaviours in animals to studying physiological processes during sexual arousal in humans. Sex researchers use many different methods to study questions within their field of study, from self-report measures (questionnaires) to brain imaging technology. The hope is that, no matter what we study and how we do it, in the end, we will likely “help” people in some way, for example, through advancing knowledge or impacting health care so that people can receive treatment for sexual dysfunctions more quickly.

One example of health care significance—and the issues that we face—is based on a condition that we study, Persistent Genital Arousal Disorder (PGAD). PGAD is characterized by the experience of persistent, unwanted, and distressing physiological genital arousal (in other words, genital sensitivity, swelling, feeling on the verge of orgasm) in the absence of sexual thoughts, fantasies or desire. Many people with this condition are so highly distressed that they think about suicide much more so than people in the general population (Jackowich et al., 2018); this distress results partly from the fact that the condition is not taken seriously by many health care providers or members of the public. Why might that be? Well, the simple existence of this condition challenges some assumptions about sexual arousal—namely that arousal is always something wanted, positive, and pleasurable. The result? When we post ads to recruit participants for a study, we see  comments/responses that often include misunderstanding about unwanted genital arousal, humour, or sarcasm; for example “isn’t this just hypersexuality?” or “I wish my wife experienced this!”, or “glad someone is finally solving this ‘problem’ ”. These invalidating reactions are disheartening, especially since they are often mirrored in the clinical setting: oftentimes, when people with PGAD disclose their symptoms to a health care provider to get help, they don’t get help because they are not believed. Sex researchers can play a really important role in translating research findings to health care providers and the public to help change perceptions of conditions like PGAD—so that it can be taken seriously. We did that with vulvodynia. How? By doing excellent science that is relevant and meaningful (Bornstein et al., 2015; Goldstein et al., 2016; Pukall et al., 2016).

But, in order to do all the science-y studies that we do so well with real people, we need to recruit real people. One might think that because of all the stigma out there, we might have real issues recruiting people, because… well, who on earth would participate in sex research studies? On the other hand, some people might think that people will line up for hours to participate in our studies, especially the ones involving porn (like this one). Of course, neither extreme is correct. We certainly do get participants for our studies and we have lots of strategies for recruitment. But the one we want to focus on for this blog is the social media—and our experiences recruiting via social media over the last 10 years.

The Internet has given researchers a wonderful platform to quickly and cost-effectively recruit participants. At times, we have had great success, depending on the study title, mind you. A recent study (an MRI study investigating clitoral structural changes during arousal) that we were recruiting for invited some interesting responses, like several “Haha” reactions and other comments, such as [men] saying “Ooh I'm interested in researching female sexual arousal ;)”, or “I know everything there is to know about clitoral arousal; just ask me, I have all the answers, I’m that good!” Ok, ok, we get it: you think the study on clitorises is funny, you like sex, and you think you are so good at sex that you want to announce this “fact” about yourself on social media.

But, it can be really frustrating to see comments that  mock the study, or worse, make fun of people who have a particular condition. Some commenters even think they have all the answers already (if we did, then we wouldn’t need to do research on the topic, right?). For a recent study on female genital pain, someone stated: “something is wrong with them if it hurts, they should have a glass of wine”. Yes, something is wrong, and it is not with the person, it is with their genitals. And the glass of wine part? Not only is it dangerous and irresponsible to suggest that someone get drunk to engage in penetrative sexual activity (consent, anyone?), it is useless information. Of course that doesn’t work. Why would it? Is alcohol a cure for chronic pain? Nope.

Part of our job these days is to monitor comments when we post new studies, so we can delete rude and inappropriate comments. Sometimes, we also have to ban people from our social media sites.  

And there is another layer to this social media topic, and it is truly disappointing. Recently, Marketplace on Facebook took down our ads because of “crude language”. Sure, “clitoris” might not be a word that you hear over dinner (unless you are having dinner with us!), but it is an anatomical term that refers to a body part—but because it is a “sexual” body part, it is apparently not ok. And there is only so much creativity that we can do to meet the “standards” while being honest about our research study. I mean, how else can we be honest about the point of the study? Call the clitoris the “happy button”? The “lovebud”? Who would know what we were actually talking about?

The same thing happened when we posted on Facebook to recruit prostate cancer survivors and patients for a sexual health study. Our ad was immediately rejected due to “sexual content.” When the student appealed the decision, we were able to reach an actual person who reversed the decision. But we had no such luck with the French ad for the same study, unfortunately. We reached no one, even after multiple attempts, and to this day, we have not been able to advertise on Facebook for the French version of this study. We’ve been completely cut off and there is nothing we can do about it.

Other online avenues have also proven difficult. Many social media platforms will not let us post words that are considered “lewd” or “offensive”, so our website and lab name alone get flagged constantly (sexlab.ca). If a study title and description contains words like “genitals”, vulvar” sexuality”, and “sexual health”, we are immediately rejected from posting. Don’t even ask what happened with our “anal pain” study!  

More recently, all of our lab’s study ads were removed from Kijiji. Upon investigating the policy cited by Kijiji for removing our ad, we were baffled to find out that the same policy also covered ads for prostitution and human trafficking. We get that these words are triggers for “bad things related to sex”, but not all “sex stuff” is predatory or involves selling or buying sex. Sometimes, the word “sex” signals a real attempt to do serious scientific research on an issue affecting real people. But how do we get this message across to the people who run these sites? Where ARE the people who run these sites? We have had very little luck finding anyone.

What can we do? Good question. The issue is a much bigger one than our advertising woes. Our society both loves and hates sex (free unregulated porn is available but solid sexual health education is not, so many young adults are using porn as “sex ed”, which is not a great idea—we need another blog on this topic, that’s for sure), and this ambivalence translates into discomfort about sex. That discomfort comes out in many ways; some people deny the importance of sexuality knowledge/education/research, make fun of sex, or belittle it. We need to create a culture of acceptance of sex and frank conversations about it, to start breaking down the stigma associated with it. And a large part of that culture involves conducting sex research, translating the findings of the study to the people, and sites and other people being open to supporting this research.

Caroline Pukall, Shannon Coyle, Robyn Jackowich, Meghan McInnis, Lindsey Yessick

References

Bornstein, J., Goldstein, A. T., Stockdale, C. K., Bergeron, S., Pukall, C., Zolnoun, D., . . consensus vulvar pain terminology committee of the International Society for the Study of Vulvovaginal Disease (ISSVD), the International Society for the Study of Womenʼs Sexual Health (ISSWSH), and the International Pelvic Pain Society (IPPS). (2016). 2015 ISSVD, ISSWSH and IPPS consensus terminology and classification of persistent vulvar pain and vulvodynia. Obstetrics & Gynecology, 127(4), 745-751. doi:10.1097/AOG.0000000000001359

Goldstein, A. T., Pukall, C. F., Brown, C., Bergeron, S., Stein, A., & Kellogg-Spadt, S. (2016). Vulvodynia: Assessment and treatment. The Journal of Sexual Medicine, 13(4), 572-590. doi:10.1016/j.jsxm.2016.01.020

Jackowich, R., Pink, L., Gordon, A., & Pukall, C. (2017). 059 health care experiences of women with symptoms of persistent genital arousal. The Journal of Sexual Medicine, 14(6), e369-e369. doi:10.1016/j.jsxm.2017.04.057

Pukall, C. F., Goldstein, A. T., Bergeron, S., Foster, D., Stein, A., Kellogg-Spadt, S., & Bachmann, G. (2016). Vulvodynia: Definition, prevalence, impact, and pathophysiological factors. The Journal of Sexual Medicine, 13(3), 291-304. doi:10.1016/j.jsxm.2015.12.021

Discussions of Pleasure: How Ontario’s New SEX EDUCATION Curriculum has Failed to Live Up to the Hype

Tweet In 2017, a 23 year old woman left a date with celebrity comedian and self-described feminist, Aziz Ansari, in tears. In an article by Katie Way for babe.net, and under the pseudonym Grace, she recounts in vivid detail Ansari’s not-quite-illegal but nevertheless non-consensual sexual conduct over the course of the evening. It is a story that is unsettlingly familiar for women in our society; Ansari repeatedly and forcefully asked for sexual activity until Grace felt she had no option other than resign her consent; Ansari continued to engage in activities with an unenthusiastic and visibly distressed partner; and after the fact, Ansari claimed that at the time, he was unaware that his actions were inappropriate (Way, 2018). Ansari clearly disregarded or was unaware of the necessity of willingly given, enthusiastic consent. He also prioritized his own pleasure over a mutually respectful experience and approached sex in a combative manner by attempting to take what he wanted from Grace and impose his expectations for the night on her, regardless of how she felt.

In the midst of movements like Time’s Up and Me Too, for which Ansari himself has been a vocal advocate, there have been two main responses to Grace’s story in mainstream discourse. The first suggests that Grace does not belong to these movements and that she is overreacting or ‘crying wolf’-she gave consent and therefore Ansari should not be penalized as he did not break any laws. The second is that Grace’s consent was incomplete and unwillingly given, therefore Ansari’s actions were a violation and he should be called out or shamed in a manner similar to Harvey Weinstein and Kevin Spacey. I would suggest a third response, that Grace’s story is representative of a systemic injustice that starts with the way we frame discussions of sexuality in our society. Too often, the importance of mutual pleasure and informed, ongoing, enthusiastic consent are overlooked, and experiences like Grace’s dismissed as merely bad sex. However, it is often much more, it is disrespectful sex, and it disproportionately effects women. Rather than impose further guilt on Grace or penalize Ansari, I would argue that we have an obligation to the the next generation to reshape our understanding of sexual experiences and include not only the legal framework of consent, but also expectations of thorough communication and discussions of mutual pleasure. Without these, consent is a weak legal construct with limited benefit to individuals and their lived experiences of sex.

In my opinion, discussions about the importance of mutually pleasurable sex should take place before adolescents are sexually active, in order to establish it as a norm to which every sexually active individual is entitled. They should be included in sexual education classes alongside discussions of consent and healthy relationships. In 2015, the government of Ontario had the opportunity to enact a great deal of change in this area when they released the updated provincial sexual education curriculum. However, the updates fell short and among the gaps that remain in the curriculum is a failure to address pleasure as a priority or reality of sexual activity.

This omission is clearly intentional, and the reasoning for it understandable. Many stakeholders, particularly parents and religious groups, fear that addressing pleasure in the context of sexual activity is an endorsement that will encourage students to have sex. However, these students likely will engage in sexual activity eventually, and by avoiding discussions of pleasure out of fear, we rob students of the tools they need to engage in healthy sexual relationships throughout their lives. They may not have another opportunity to learn these skills as it takes immense courage, as well as a certain level of health and internet literacy and research skills to seek out accurate sexual health information outside of school.

Another reason not to allow parents’ fears to dictate the sexual education curriculum is that Ontario students are already highly exposed to sexuality, through various forms of media, from a young age. However, this exposure is biased in favour of heteronormative and sexist notions of sexuality that are rooted in dominant discourse. These norms perpetuate unrealistic and often unhealthy ideals about sexuality, such as the double standard that exists between women and men regarding masturbation. This double standard has had devastating consequences on women’s feelings and expressions of sexuality, and often results in associating sexual experiences with guilt and shame. These ideals also contribute to the competitive approach to sexual activity that has become normalized in our culture. People like Aziz Ansari have been socialized to believe that in order to have a satisfying sexual experience, they must take from their partner something which they do not want to give, rather than work together to create a mutually pleasurable experience.

Furthermore, adolescents are exposed to sexually explicit material that is contributing to their perception and expectations of sexuality. If sexual education does not adequately address the realties of sex, including pleasure and appropriate behaviour, students may not understand that the lens through which they view sexuality is distorted and will likely develop unattainable expectations of themselves, their partners, and their sexual experiences.

Although the Ontario sexual education curriculum is unlikely to address these concerns in the near future, they are being tackled in other ways. Pornhub, one of the largest websites for sexually explicit content in the world, has recognized that their material contributes to problems which are exacerbated by the inadequate sexual education that most North American youth receive. As such, they have chosen to use their platform to promote healthy, inclusive, sex-positive sexual education through the Pornhub Sexual Wellness Centre, a branch of their main website. Although the site is not perfect, it is challenging to navigate and not as well marketed as had been hoped for, it does approach this issue in a potentially revolutionary way. It was developed by a clinical sexologist and is one of the first websites to provide accurate, inclusive, and easily accessible sexual information internationally, to people who would otherwise not be exposed to it. Though Ontario’s new sexual education curriculum has not lived up to expectations and has failed to address pleasure as a reality of sexuality, exciting alternatives such as the Pornhub sexual wellness centre may engage students with this information in new and exciting ways.

Sophia Christopher, BSc, Queen’s University

References

Pornhub Sexual Wellness Centre. (2018). https://www.pornhub.com/sex/

Ontario Ministry of Education. (2018). Sexual health education by grade. https://www.ontario.ca/page/sex-education-ontario.

Way, K. (2018). I went on a date with Aziz Ansari. It turned into the worst night of my life. Babe.net. Retrieved from https://babe.net/2018/01/13/aziz-ansari-28355