What to expect when you're expecting? A host of disinformation. – The Boston Globe

What to expect when you're expecting? A host of disinformation. – The Boston Globe

Making new humans is a dangerous and mysterious endeavor — not that you would know it from reading the Supreme Court’s recently leaked draft opinion that would allow US states to force women to carry unwanted pregnancies to term.
For 40 weeks, a human body builds another human body inside itself. Doctors understand surprisingly little about this science-fiction-sounding process. What is a placenta, really? Can preeclampsia, a common cause of maternal death, be prevented? We do not know.
The problem is a lack of research. Pregnant women are not included in most clinical trials for fear of harming the fetus. Until 2019 the federal government classified pregnant people as too vulnerable to be able to consent to be studied. The National Institutes of Health, which has publicly disclosed how much money it devotes to different health categories since 2008, added pregnancy as a category only in 2017.
So many unknowns about a time of medical fragility help false notions proliferate and leave pregnant women susceptible to misinformation. Lack of knowledge also means that pregnancy, as a public health matter, becomes a ripe target for partisans promoting disinformation for political or financial gain. Consider Justice Samuel Alito’s draft decision arguing for overturning Roe v. Wade. It is rife with inaccuracies, myth, and distortion.
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One example is Alito’s citation of the archaic British common law term “quickening,” which refers to the moment when the mother first feels fetal movement. For centuries, quickening was inaccurately used as a proxy to understand when life begins. It represented the cutoff point for legal abortion, which, in Alito’s reading, occurs at 16 to 18 weeks of pregnancy. Modern science has since established that perceiving fetal movement does not correlate with viability, nor do these milestones occur at the same time in gestation for all pregnant women. Quickening is, in other words, not science — and this is not the only flagrant flaw in the 72-year-old conservative male justice’s reasoning.
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Alito’s draft ruling also portrays adoption as a good alternative to abortion. Adoption is an alternative to biological parenthood, but it is not an alternative to the experience of building a body inside your body. Pregnancy transforms your body and alters your life. And it can be deadly — a fact that Alito ignores.
Unlike legal abortions, which are very safe, bringing a child into this world is risky. Nearly 24 of every 100,000 US women who get pregnant die from either pregnancy, birth, or postpartum complications, according to the Centers for Disease Control and Prevention’s 2020 data. Pregnancy is far riskier for Black women. Nearly 54 Black women die for every 100,000 live births. For white women, the maternal mortality rate is 19.1. The mortality rate for car accidents is, by contrast, 11 deaths per 100,000 people. Legal abortions are so safe that the CDC had to collect data for five years to document enough deaths to calculate an abortion mortality rate, which is .41 per 100,000 induced abortions.
Alito’s decision does not account for other pregnancy-related pain and suffering. Giving a newborn away is emotionally wrenching. So is anonymously dropping an infant on the doorstep of a “safe haven,” like a firehouse, another Alito-approved abortion alternative.
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Repeatedly citing false and misleading claims in a legal decision that eliminates abortion protections is only possible because of the general dearth of evidence-based, trustworthy information about pregnancy.
Rumors about COVID-19 vaccines during pregnancy are a prime example. Although pregnant women are at greater risk from the virus, they were excluded from the first rounds of clinical COVID-19 vaccine trials. As a June 2021 editorial in the New England Journal of Medicine put it, this left “pregnant women and their clinicians . . . to weigh the documented risks of COVID-19 infection against the unknown safety risks of vaccination.” By Sept. 27, 2021, just 31 percent of pregnant women were vaccinated, according to the CDC. The safety of COVID-19 vaccination during pregnancy is now well established.
When pregnant women venture online with questions, they may not find good answers. Pregnancy is what disinformation researchers call a “data void” — a topic that results in minimal, low-quality, or manipulative information from search engine queries. Data voids are a known vulnerability that contributes to the spread of misinformation and disinformation.
Facing this data void, pregnant people turn to one another online. Subreddits, Facebook groups, YouTube series, newsletters, and local pregnancy support groups all become places to crowdsource answers to the questions the medical establishment can’t provide. When people swap anecdotes or myths online, it is with the intention of helping, but it can also spread misinformation.
Apps and websites aimed at providing pregnancy information can also be rife with misinformation — either in their official content or in open forums on the platforms. Recently, a Reveal investigation found that the American Pregnancy Association, a seemingly unbiased medical resource, has a hidden antiabortion agenda. About 1.4 million people visit the organization’s website each month, according to Similar Web. Those who seek facts about abortion find links to adoption agencies and a list of the procedure’s risks, with no mention of how rare they are.
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Scientists and advocates are working to improve our understanding of pregnancy. Since 2017, the US government’s budget for pregnancy research has nearly doubled — from $319 million to an estimated $607 million this year. In 2018, a government task force laid out 15 recommendations for safely studying and treating pregnant women. But scientific discovery moves slowly. Much evidence-based information about pregnancy and women’s health remains years away.
In the meantime, antiabortion activists exploit the pregnancy data gap to spread lies promoting their cause, as they have done for years.
One pervasive myth is the erroneous notion that abortion causes breast cancer. Another is the dubious claim that medication-induced abortions can be reversed “with some strong and timely doses of the hormone progesterone,” according to a June 2017 article by Mother Jones about antiabortion doctors who sell this patently unscientific treatment.
The pregnancy data void is one reason antiabortion activists and conservative Supreme Court justices can misconstrue what is actually at stake when pregnancy occurs — and when its termination is forbidden.
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Emily Dreyfuss is a writer and co-author of the forthcoming book “Meme Wars: The Untold Stories of the Online Battles Upending American Democracy.” Catesby Holmes is a journalist whose work has appeared in Wired, Slate, and Bloomberg News. Both authors are fellows on the Technology and Social Change team at Harvard University’s Shorenstein Center.

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