Thousands of women help Isala map their vaginal microbiome
On 1 July, the documentary The Wonder Down Under will premiere in Antwerp. The film takes a look at Isala, the large-scale citizen science project into the vaginal microbiome, but the story behind this project is at least as intriguing. Professor Sarah Lebeer (Bioscience Engineering) tells us how Isala grew from an ambitious idea into a movement to which thousands of women contributed voluntarily – and why this could be a new standard for science.
In short
- Isala is a research project investigating the female microbiome. The goal? To isolate beneficial bacteria that naturally protect women from infections and other diseases.
- Instead of a traditional study, the team opted for citizen science, which led to massive voluntary participation of 6000 women.
- Participants received transparent and personalised feedback, which ensured high engagement and openness about intimate health.
- The project yielded not only publications in top journals, but also new insights with potential for probiotic development.
An idea born of frustration
‘In previous research, I investigated how lactobacilli – beneficial bacteria – could inhibit the HIV virus,’ Lebeer says. ‘But I hardly found any samples of healthy vaginal lactobacilli in the databases. That was particularly frustrating. If you want to know what’s going wrong, you first have to understand what constitutes “healthy”.’
This less-than-ideal situation served as the inspiration for Isala. Lebeer and her team began collecting samples from women without gynaecological symptoms. The goal? To isolate healthy lactobacilli that produce natural antibiotics or have other ’superpowers’. ‘We want to find bacteria that can help protect women from infections themselves, without the need for traditional antibiotics,’ Lebeer says.
Why citizen science?
Instead of the traditional route – a clinical study with a limited number of patients – the team radically opted for citizen science. ‘We initially feared that it would be difficult to motivate healthy women to take part in such an intimate study. But at the same time, we believed that if we explained it well and took women seriously, they would cooperate. And that turned out to be the case.’
A carefully elaborated campaign with clear explanations and transparent communication generated a huge response. ‘We were aiming for 200 participants. Within the hour we had reached that number. After one day, we were at 1000. In the end, we ended up with 6000 registrations, after which we had to close the call. Did we panic? Yes, for a moment. But it also spurred us on.’
Practical and personal
Asking 6000 women to collect a sample, at home, and fill in an extensive questionnaire – it sounds like a logistical nightmare. ‘We had to rethink the whole thing. Instead of monitoring 200 women at eight points in time, phase one consisted of 3300 women collecting one sample and completing the questionnaire. We promised everyone that we’d provide them with a personal microbiome report. Transparency was an absolute priority.’
That report, explaining their vaginal bacteria, was carefully put together to avoid concern. ‘We wanted to inform women, not diagnose them. Things aren’t all that clearcut: even “less favourable” bacteria aren’t necessarily a problem. After sending out the reports, we fortunately didn’t receive any worried emails. On the contrary: women felt appreciated and involved.’
We initially feared that it would be difficult to motivate healthy women to take part in such an intimate study. But we believed that if we explained it well and took women seriously, they would cooperate.
Those who think vaginal health is a taboo subject are mistaken, Lebeer observes. ‘We thought it would be a sensitive topic. But once there was an open, positive platform – with a subtle logo, an accessible website and a humorous tone of voice – it turned out that women were very keen to talk about it. There were even lots of men who showed interest.’
Added value of citizens
According to Lebeer, the power of citizen science lies in engagement. ‘Not only did our participants provided samples, but they also helped us figure out what the questionnaire should look like: was there a need to include questions about nutrition, or menstrual products, or mental health? As it turns out, those things also have an effect on vaginal health. Such suggestions often came in via Instagram, the website or discussion evenings. And they were worth their weight in gold, making the research so much more relevant.’
On top of that, the project brought together surprisingly diverse profiles. ‘With citizen science, you typically reach mainly highly educated white people, but we were happy we still appealed to a reasonably diverse audience. For one thing, participants had a wide range of ages: the oldest one was 98, the youngest had just reached adulthood. Ten per cent of our participants weren’t born in Belgium. We also did follow-up research with women from an immigrant background on, amongst other things, the effect of Ramadan. For these and other intervention studies, women sometimes had to come by monthly, use different menstrual products one after the other, and so on. Their motivation was impressive. They clearly felt honoured to have been selected for follow-up studies.’
‘Women have to know this’
For Nathalie Boelens, science communicator and first-time participant, taking part felt like the obvious choice. ‘I almost felt obliged to participate in something that puts the female body centre stage. Historically there’s been so little research on women – we still suffer the consequences of that today. Think of male-based medical standards, or the fact that vulvodynia and endometriosis are still often misunderstood. I suffer from those conditions myself, so I know how concerning that lack of knowledge is.’ The openness of the project also convinced her. ‘It was not a top-down clinical investigation, but a warm, respectful invitation to make a difference.’
To Nathalie, Isala isn’t just a study but a form of recovery: ‘We were never taught to talk freely about our bodies. Female sexuality wasn’t discussed at school. I myself talk openly about such topics, but those around me still often feel ashamed or uncomfortable. Even in everyday situations, like when there’s a tampon lying on the table, you can tell how big the taboo still is.’ For Nathalie, therefore, participating in the documentary was a symbolic step: ‘I told my story and also participated in the swimming pool scene – I was a bit anxious about it, but it was incredibly empowering. It felt like: this is all ours. This is what women have to be able to discuss and have to know, without feeling embarrassed.’
Time-consuming sampling
Biomedical Sciences student Meryem* (fictitious name, prefers to remain anonymous) participated in the Rufaida project, a follow-up study to Isala that focuses on the impact of fasting during Ramadan on both the gut and vaginal microbiome. In Rufaida, the mental and social effects of fasting are also investigated. ‘Sampling was definitely time-consuming,’ Meryem says. ‘Every week we had to take and hand in vaginal and stool samples ourselves, and also fill in questionnaires.’
Nevertheless, Meryem felt it was important to participate: ‘Women – particularly Muslim women – are strongly underrepresented in scientific research, so that’s why we wanted to do our bit. The researchers contacted us through our Islamic student association Niyyah. At home, they don’t know I was participating in the research. They have no affinity with science, and they wouldn’t understand it. For those around me, it’s still a taboo subject. So I don’t feel the need to be open about it. But I do very much want to help science through my participation, and I hope that the taboo will disappear for future generations.’
Scientific output
Isala’s scientific impact is unmistakable. In 2023, the first paper was published in Nature Microbiology, and this year one in Nature Medicine was added – a first for a citizen science project. Meanwhile, collaborations with other universities, fertility clinics and gynaecological centres are ongoing. ‘We have become a centre of reference for the healthy vaginal microbiome,’ says Lebeer. ‘We’re now investigating links to infections, fertility and even psychological wellbeing.’
One of the most promising findings is that some vaginal bacteria can produce vitamin B2. ‘That opens doors to completely new applications in the form of probiotics. We’re now investigating whether those bacteria also effectively impact the body when women take them orally. In the future, we hope to make vaginal medicines with live bacteria as well.’
Support this research
Isala has already written history, but they plan on doing a lot more still. Want to help put the female microbiome on the map? You can now donate directly to this project.
Premiere of 'The Wonder Down Under'
Stroom went to take a look at the Antwerp première of ‘The Wonder Down Under’ (a film by Janet van den Brand and Nina Landau, in a production by Associate Directors). The report was provided by Lise Wouters and Alexander Delport.