When people are stopped from telling their story

When Kellie* posted a picture of herself breastfeeding at work on a website of the Australian Breastfeeding Association (ABA), she had many reasons. Pride in her new baby was clearly one, although the baby was not visible you can only make out the top of Kellie’s ponytail. Kellie is behind a one-and-a-half-metre cardboard partition that separates her from other desks in the corner of a shared office. The partition has a handmade sign – Breast Feeding Zone. The photo is about determination. Triumph. “This is how I manage it,” it seems to say.

Some 96% of women start breastfeeding after the birth, but just 15% are still doing so at six months, most likely because supportive policies in workplaces are uncommon. The purpose of our study was to assess the prevalence of good policies to support breastfeeding and to prompt advocacy.

However, we were not able to tell the story of hundreds of women across Australia who have to ‘make do’ when it comes to breastfeeding at work. The University ethics committee thought our citizen science project was risky. Women were asked to share anonymised photos on the project website of where breastfeeding, or expressing milk, in their workplace would take place. But after reading all risk warnings and consent conditions imposed by the ethics committee very few women took part.

While 234 women liked the project’s Facebook page, only nine women ended up sharing photos. Kellie was not one of them. We learned about her through the ABA as we were co-designing the study. Her photo would have been disqualified because she was in it. We were happy to exclude people from photos, we just wanted them to show us photos of where they are expected to breastfeed. Good facilities would be a private lounge area and fridge, like the ABA has been able to get into some large public sector and corporate workplaces. But more likely, in smaller workplaces, we were expecting photos of places like bathrooms, car parks, tea rooms and storage areas.  

We believe the real dampener on participation was the ethics committee requirement that employers had to give permission for the photos to be taken. In eight different places we had to state the ‘risk’ participants were taking on if they did not secure permission. But we saw the possible harms and their likelihood very differently. In our view, the small possibility a woman would be admonished for taking a photo of an office or toilet cubicle (in contravention of any workplace photography policy) had to be balanced against the more certain probability that she would feel demeaned or embarrassed to have to ask permission to do so.

Public Health Ethics has recently published our case study ‘The risk management practices of health research ethics committees may undermine citizen science to address basic human rights’. We hope this will help prompt a wider conversation and sharing of experience from citizen science. We hope ethics policies in population health will be reviewed.

Don’t mistake me, the people on our ethics committee were just trying to do what they saw as right. But to get things ‘right’ ethics scholars have suggested that we need a more retrospective review of research and learning from real-world experience. We’ve invited our ethics committee to join us now in that. We’ll never get stories from the margins, where we have a real duty of care, if we keep making it so hard for people to tell them.

*not her real name