Women's Issues

It was mid-September when I first saw a very faint but recognizable second line on an at-home pregnancy test. I had just returned home from a work trip to the UK, and after days of discomfort—retching at the smell of toothpaste in the hotel bathroom, repeatedly excusing myself from a business lunch to get some discreet relief from a sudden bout of gas—I suspected I was pregnant. I took the test at 5:30 in the morning, jet lagged and bleary eyed. My husband was blissfully asleep, so I informed my dog and cat they would be big brothers, and then did what most mothers-to-be in the internet era do: downloaded pregnancy apps. What size fruit was my embryo? I needed to know, and fast.

The answer, I soon discovered, was a poppyseed. I wondered how a poppyseed could be making me feel so terrible so soon, and, more pressingly, if this app could tell me whether the sharp pains on the left side of my abdomen meant that something was wrong with me, or the baby, or both. At the very least, I figured, it would provide me with some answers or inner solace until the pregnancy books I ordered arrived or I could see my ob-gyn.

I was wrong. Pregnancy apps, I quickly learned, aren’t in the business of providing comfort; they are a fantasy-land-cum-horror-show, providing little realistic information about the journey to parenthood. They capitalize on the excitement and anxiety of moms-to-be, peddling unrealistic expectations and even outright disinformation to sell ads and keep users engaged. They foster negative repercussions on the physical and mental health of both mothers and their unborn children, generating profit from the onslaught of emotions brought on by pregnancy. They are yet another way the internet and America’s health care system are failing pregnant people.

As a disinformation researcher, I study how people are manipulated online, so I was mentally prepared for the advertising blitz that would follow me from the Apple App Store and Google searches to my Facebook and Instagram feeds. When my husband and I decided it was time to have a baby, I was careful to turn on a VPN and search for answers to my pregnancy-related queries in incognito windows; I wasn’t sure how long it would take us to conceive, and I was wary of the emotional burden of targeted ads following me around the internet. But once I got pregnant, going through that anonymity wringer every time I had a question became burdensome. So I caved, and accepted that the ads I saw would no longer depict luxury handbags and exotic vacations I couldn’t afford, but eco-friendly cribs and organic onesies I probably didn’t need. I assumed that would be the worst of the internet’s offenses.

The truth was far worse. As I soon realized, the most-downloaded pregnancy apps bear a closer resemblance to the political disinformation I research than a reliable medical resource for parents-to-be. The companies behind the apps caution users in long, inaccessible terms of service written in legalese that they are not a substitute for medical advice or care, however, the apps are still incredibly popular: In one 2016 study, at least 55 percent of participants used a pregnancy app to track and learn about their pregnancies, with first time-parents more likely to seek them out. It’s likely the usage of the apps has only increased in the intervening time. The top five apps boast incredible user statistics, reporting between tens of millions and hundreds of millions of lifetime users. Like social media platforms, they are free, generating revenue through advertisements, referrals, and in-app purchases. Many are run by “lifestyle” companies, a fact borne out in the information they provide: A 2021 academic study surveyed 29 apps and found over 60 percent did not have comprehensive information for every stage of pregnancy and only 28 percent cited medical literature.

From the very first interaction with one of these apps—usually a sign-up screen—it’s clear they don’t exist solely to help users through pregnancy. Begrudgingly, I provided my email address to each app. (Only one of the top apps, What to Expect, of What to Expect When You’re Expecting fame, allows you to skip this step, though each time you open it a popup reminds you that you’re missing out on a “personalized experience” by withholding your data.) I checked the box acknowledging that the app developers might share my information with partners—otherwise, no app for me!—but the immediacy with which it happened was staggering. Within minutes, I had a health newsletter from WebMD in my inbox. I was also apparently now subscribed to emails from Pottery Barn Kids. (I can’t seem to unsubscribe, either.) Within weeks, I would receive emails from local preschools, encouraging me to think about education for my now pea-sized, tail-bearing unborn child. All this while navigating roiling nausea, unmatched fatigue, and the sharp pain on my left side that still hadn’t gone away.

Within the apps themselves, the situation is even more concerning. Notifications and ads push products and encourage purchases, often at the expense of users’ mental or even physical health. In those early days, when every mom-to-be carries the weight of one foreboding statistic—one in four pregnancies end in miscarriage in the first trimester—the apps are already encouraging users to plan ahead to the birth and arrival of their baby through ads that are difficult to differentiate from medical content. “Start building your registry!” they implore (and then harvest your physical address information to send promotional materials and samples). “Register for your insurance-provided breast pump!” they remind you three times per visit, though your boobs haven’t yet begun to grow. “Have you thought about your cord blood banking preferences?” they ask.

Of all the troubling suggestions made in the apps I visited, cord blood banking was perhaps the most nefarious, as Jennifer Gunter, a Bay Area–based ob-gyn and author of The Vagina Bible, points out. Gunter cautions her patients to avoid any online medical information that is attempting to sell them health-related products, whether in the form of cleverly disguised advertisements or more blatant sponsored content. Advertisements for cord blood banking—the process of collecting and storing stem cells from a baby’s umbilical cord in case the child or its sibling should encounter a future medical emergency—are a major red flag, she says. Private cord blood banking incurs startup costs of $1,000 to $2,000, and at least $100 per year for storage after that. The routine use of this expensive process is not supported by the American College of Obstetricians and Gynecologists (ACOG) for those without an established medical need, yet on pregnancy apps advertising it, Gunter says users are exposed to “availability bias. You see these advertisements and think ‘Gosh, I better get that.’”

The drumbeat is relentless. “When you’re expecting, don’t expect stretch marks,” one in-app ad for belly butter tells me. In reality, stretch marks are genetic and no amount of organic shea butter will save your tummy from the incursion of those pesky pink rivets. The ads follow me to social media, where I’m told I should buy a designer prenatal vitamin that costs three to four times as much as the drugstore variety, yet doesn’t include the folic acid necessary to prevent neural tube defects.

Even if credible information is presented separately from advertisements, in pregnancy apps or elsewhere, individuals have trouble distinguishing it. A 2015 study from the University of Georgia comparing news and sponsored content found that 60 percent of readers engaging with advertising didn’t realize that they weren’t reading objective news when disclosure labels were placed at the top of a story—where most pregnancy app labels are. Only one in five readers in the study was aware that what they were reading was sponsored content at all.

Some apps boast message boards and communities where future parents can connect with one another. Recently, they’ve been plagued with Covid-19 misinformation and anti-vaccination sentiments, though at least one popular app has introduced content moderation to try to protect its users from those virulent falsehoods. Even so, the clinically reviewed medical information could be written more clearly to avoid inadvertently promoting falsehoods. Many of the apps’ articles ask clickbait questions like: “Can you have sex while pregnant?” and “Should you be vaccinated against Covid-19 while pregnant or breastfeeding?” More responsible headlines—for those short on time or disinclined to read a 10-paragraph article to answer their questions—would be: “Feelin’ Frisky While Preggers? Go Ahead, Get Your Freak On!” and “Covid-19 Vaccination Protects You and Your Baby: Get Your Shot Today.” If these apps were in the business of better health outcomes, and not better bottom lines, such practices would be the foundation of their business models.

As I tried to decide which app was the least bad, I felt a sense of frustration and disappointment that is distinct to being a pregnant person in America. We are not seen as individuals worthy of rights, autonomy, or respect on our own. We are a means to an end—a home for a growing baby; a caring, anxious, overjoyed bank account to be advertised to and manipulated. We are expected to return to work soon after giving birth, with a dinner-plate-sized internal wound where our recently expelled placenta was, and shed the weight that nourished our baby as quickly as possible. We are expected to navigate a complicated and life-threatening medical event without universal health care and without free, trustworthy, vetted, and accessible medical information. Meanwhile, our sisters and friends are some of the nameless women who contribute to the highest maternal mortality rate among developed countries. The United States is not rushing to solve any of these problems, and it is not rushing to stop the exploitation of pregnant people.

In my six years as a disinformation expert, I’ve written and spoken and testified before US and foreign government bodies about the harm of foreign online influence, of online hate speech and harassment, of pandemic misinformation and election conspiracies. We’ve seen scandal after scandal break, aghast at how officials use private email servers, about how teenagers’ mental health is affected by algorithmic bias. But for a class of people (and future people) about which the American political classes purportedly care deeply, no one seems at all bothered about the information crisis affecting pregnant people. We aren’t supposed to be mad about it, either. Like everything else in pregnancy, we’re supposed to grin and bear it, to recognize how privileged we are to participate in the miracle of life.

And for what it’s worth, I do recognize my privilege. I’m healthy, I had no trouble conceiving, I have access to health care, a supportive partner and mother, and the time, volition, and education to read a lot of books and sniff out pregnancy misinformation. That recognition comes with a more somber realization, though: For many pregnant people—especially those in marginalized or underserved communities where maternal mortality rates are highest—that is not the case. These apps are part of an internet and a broader society that is failing women, failing mothers, failing pregnant people, and failing children.

Protecting citizens from the sort of public health and safety calamities—not to mention predatory advertising—that I’ve encountered on pregnancy apps should be the job of the federal government. But we’ve seen how the fight for better oversight and regulation of social media has gone in Congress; even when children, teenagers, or our nation’s hallowed democratic traditions are at risk, little seems to spur action. Short of better oversight and regulation, governmental or scientific bodies like ACOG could develop recommendations and guidelines for app developers and users. Right now, one of the only such roadmaps to the pregnancy app landscape for users is a Forbes listicle that doesn’t include accuracy in its ranking. If they can’t control the apps, the National Institutes of Health or the Centers for Disease Control could at least provide reliable counterprogramming by replacing their jargon-filled pregnancy pages with an accessible, week-by-week guide like the one available from Britain’s National Health Service, which I’ve been referencing for the past five months. But in the long term, we need to build an internet that is engineered with women, children, and marginalized people—not just cisgender white men and profit—in mind.

My ob-gyn practice took charge of the situation by developing its own no-cost pregnancy app. It’s a little less flashy, a lot less overwhelming, and a bit more cumbersome than its for-profit competitors, but it’s ad-free. It does not ask for any of your personal information aside from your due date. Its singular goal is to help its users through pregnancy. How refreshing.

It shouldn’t be. Nor should it be up to individual parents or providers to navigate the complex, fast-changing information on the internet alone. I’m an expert in online manipulation, and I still often feel overwhelmed and unsure about the pregnancy information I’m consuming. Perhaps part of that is simply the territory of motherhood. But part of it is engendered by a health care system, an internet, and a country that cares little about mothers.

Replacing words like “women” and “mothers” with terms like “birth-givers” and “pregnant people” in research risks dehumanising women and would harm decades of work to improve the visibility of women in medical literature.

That is the conclusion of 10 prominent women’s health researchers from Australia, the US, Europe and Asia who will argue in a paper published next week that replacing words like “breastfeeding” with terms such as “lactating parents” risks “reducing protection of the mother-infant [bond]” and “disembodying and undermining breastfeeding”.

The authors acknowledge words are changing to ensure inclusion of those who give birth but do not identify as women, but they argue against removing references to the sex of mothers in research and medical information.

“Desexing the language of female reproduction has been done with a view to being sensitive to individual needs and as beneficial, kind, and inclusive,” they write in the paper. “Yet, this kindness has delivered unintended consequences that have serious implications for women and children.”

Official changes to terminology to be more inclusive of trans people has become a contentious issue in Australia and overseas. The paper acknowledges that “the penalty for non-conformity with gender roles can be high”.

Governments and institutions are grappling with how to approach gender terminology. The Age and The Sydney Morning Herald can reveal that a Federal Health Department guide for pregnant and breastfeeding women regarding COVID-19 vaccination and its impact on pregnant women was edited last year to remove the term “women”, introducing errors into the scientific accuracy of the material in the process.

The source information compared disease severity of COVID in pregnant women with non-pregnant women, but when the department removed the word “women” it compared “pregnant people” with “non-pregnant people”, changing the meaning to incorrectly include men.

The department released three versions of the document, the last of which reinstated the word “women”. A spokesperson for the department said the updated guidance was published following clarification of advice from the Australian Technical Advisory Group on Immunisation and was approved by the department.

A co-author of the new paper and former president of the Australian College of Midwives, Jenny Gamble, a midwifery professor at the UK-based Centre for Care Excellence for Coventry University and the university hospitals of Coventry and Warwickshire, said sex-based language “is important due to sex-based oppression”.

“Confusing the idea of gender identity and the reality of sex risks adverse health consequences and deeper and more insidious discrimination against women,” she said. “Sex [a reproductive category], gender [a societal role], and gender identity [an inner sense of self] are not synonymous but are being treated as if they are.”

“Pregnancy, birth and early motherhood are fundamentally sexed issues, not gendered. Pregnant and birthing women and new mothers and their infants have unique vulnerabilities and also require protection.”

Researchers have lamented the exclusion of women from medical research for decades and researchers have campaigned for more biologically targeted research to understand the difference between the sexes.

Professor Gamble said the trend of erasing or redefining the term “women” had started to sweep the world and that “coming from Australia it seems that the way the UK has moved to erase the use of sexed language has been rapid and extreme”.

Transgender spokespeople say inclusion can be achieved without erasing the term women. Advocate and co-founder of Transgender Victoria, Sally Goldner, said it was possible to represent everyone who gives birth and feeds infants, including those from diverse cultural and linguistic backgrounds, who may also require customised information.

“It’s important that we represent everyone. The ‘standard cis-gender woman’ will still be able to get the messages, but then we can add in the messages we need for other groups in terms of breastfeeding/chestfeeding and giving birth,” she said.

“I think there are ways we can do it and include everyone, and make [information] comprehensive, accessible and inclusive,” she said.

“It’s really important each group gets consulted and has a sense of ownership; it’s just about listening to people so the resources are there.” The paper supports this approach.

The term “cis-gender” applies to people whose gender identity fits expectations given their biological sex.

Teddy Cook of ACON, Australia’s biggest LGBTQ health organisation, said: “While the language is changing or emerging, what we’re actually doing is taking courageous steps to be inclusive and affirming with populations who are highly marginalised, highly vulnerable and shouldering a burden of poor health no one in this country deserves.”

He endorsed the use of language such as “pregnant women and people”.

The LGBTQ parenting support group, Rainbow Families, Transgender Victoria and the Royal Women’s Hospital were contacted for this article. A hospital spokeswoman said it was not in a position to comment.

The authors of the paper, Effective communication about pregnancy, birth, lactation, breastfeeding and newborn care: the importance of sexed language, due to be published in the journal Frontiers in Global Women’s Health, include breastfeeding researcher Associate Professor Karleen Gribble of the University of Western Sydney, obstetrician Professor Susan Bewley, of King’s College London and breastfeeding and health researcher, Assistant Professor Melissa Bartick of Harvard Medical school.

They stress that some use of desexed words is appropriate, especially when dealing one-to-one with people who prefer it: “And we fully endorse the importance of being inclusive and respectful”.

“For those who are pregnant, birthing, and breastfeeding but who do not identify as women, the individual’s preferred terminology for themselves and their body parts should be used wherever possible,” they say.

As debate about gender terminology escalated in 2021, the Australian Breastfeeding Association was criticised for producing a tailored booklet on feeding for transgender parents in 2021, including the term “chestfeeding”.

The right to breastfeed or chestfeed at work was enshrined in Victorian law last year.

In late 2021, when the Royal Australian and New Zealand College of Obstetricians and Gynaecologists published an article titled Those birthing people - they’re women, by the Melbourne University political philosopher Holly Lawford-Smith in an O&G magazine edition on language in women’s health, the article was taken down within a day.

In the now-archived article, Dr Lawford-Smith, who describes herself as a gender-critical feminist, argued “considerations against gender-neutral language for female-specific health issues include the history of struggle for women’s representation in language, which our feminist foremothers fought hard to win”.

Dr Lawford-Smith has been labelled a TERF – or trans-exclusionary radical feminist – by critics of her views.

A RANZCOG spokesperson said an editorial in the same magazine stated, “the most appropriate language to use is, as always, an ongoing conversation.”

The organisation – which confirmed Holly Lawford-Smith’s article is no longer up – agrees with the researchers’ opinion that “it is a continuing challenge to apply language in a way that is clear, concise and preserves the dignity of all people being described.”

Associate Professor Gribble said she noticed sex-specific language starting to be phased out four years ago, when she was writing a paper on lactation and “someone suggested I not use the word ‘mother’.”

She and colleague Hannah Dahlen, a midwifery professor, were also prompted to examine the issue of desexed language by the 2021 cover headline on The Lancet, which read “Historically, the anatomy and physiology of bodies with vaginas have been neglected”.

Their paper says the headline, which caused fierce international debate, was part of the trend to replace the word “women” which can diminish women.

Professor Dahlen said the “very good intention” of making language inclusive “is starting to exclude women and cause rampant misrepresentation of sex in scientific data”.

Chief executive of Gender Equity Victoria, Tanja Kovac, said she was “regularly asked by our own members to comment on [the removal of sexed language]; it’s a significant feminist issue.”

“While we don’t have any time whatsoever for TERF feminism, that does not mean we don’t see a need to provide very tailored policy differences and responses for men, women, trans people who identify as women and other non-binary and gender-diverse people, who need specially, tailored policy for them,” said Ms Kovac.

A push towards desexed language, or “a great generic” removed choice around how people define themselves.

“What we’re seeing is, at an elite level, an attempt to linguistically deny the capacity for people to choose how they want to self-describe ... organisations and policy settings need to respond to people’s unique needs, you can’t pretend that nuance doesn’t exist,” she said.

“I don’t think it’s healthy for anybody to have diminished nuance in healthcare, particularly. ”

The Australian Breastfeeding Association’s Naomi Hull said the organisation agreed there were risks attached to blanket removal of sexed language. Its counsellors “tune into and mirror the caller’s language, adapting terminology as needed”, but “within mass public health messaging, such personalisation [it] is rarely possible”.

“Clear and easy to understand [and translate] concepts are pivotal, and ABA’s approach is to use sexed language, where it’s relevant to the communications.”

Breastfeeding community educator Jacquie Ducat, whose children Michael and William are five, and 15 months, said she did not take issue with such language changing as she realises desexed terminology still includes her.

“I can appreciate for some people it may feel like erasure, maybe [due to] the things they base their identity on, by changing the language it makes it feel like that is being taken away from them,” said Ms Ducat, from Melbourne.

“I can appreciate how some people feel [but] some of my circle who are more gender fluid or don’t have the typical family dynamic, [have told me] stories about how it has been very difficult to feel included, and that things are for them because there’s a lot of assumptions made.”

“Not everyone who births uses the word ‘mother’, but I can appreciate how difficult the dynamics are and the changing structure of society, and it’s happening very quickly.”

Anthropologist and breastfeeding mother from Sydney Lara McGirr said the erosion of the use of sexed language around pregnancy, birth and feeding set women back.

“This stuff is not in women’s best interest,” she said. “I think we can get it right, we can support the trans experience and validate and accept it whilst also letting mothers be ‘mothers’, and supporting and empowering them.”

“I don’t think we can do that without using the word ‘mothers’, that word permeates every language on earth and goes back thousands of years, how can we eliminate it?”