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public health – Life as an Extreme Sport
Life as an Extreme Sport

Make Oceania Great Again – Trump Administration Bans Seven Words from CDC Budget

Science, in the old sense, has almost ceased to exist. In Newspeak there is no word for ‘Science’. The empirical method of thought, on which all the scientific achievements of the past were founded, is opposed to the most fundamental principles of Ingsoc.

-George Orwell, 1984

Late in the day Friday, the Washington Post reported on the Trump Administration’s latest attempt to “make Oceania great again:” a list of seven words and phrases that the CDC is not allowed to use in any official documents being created for the next year’s budget. These words are:

  • fetus;
  • diversity;
  • vulnerable;
  • entitlement;
  • transgender;
  • science-based;
  • evidence-based.

Oh. Is that all? I mean, we wouldn’t want the Centers for Disease Control and Prevention having anything their budget about evidence-based or science-based medicine, right? Heaven forbid, who knows where that could lead? Do you study vulnerable medical populations? Apparently not according to the CDC. Are you transgender? Nothing for your health in the budget – you can’t be mentioned, you see.

Oh sure, some people will say that this merely means that the CDC must be “creative” when writing their budget request, but as Emily Nagoski noted on Twitter this morning, similar biases and bans were faced by the gay community – researchers had to say “same sex” instead of “homosexual” in order to have a chance of securing funding. No one thought that was right; it colored funding requests and constrained research.

This is much worse.

A spokesman for the Department of Health and Human Services, speaking to STAT News on Saturday, tried to downplay the already vocal pushback on the ban. Of course, if you actually read what he said,… “The assertion that HHS has ‘banned words’ is a complete mischaracterization of discussions regarding the budget formulation process,” [Matt] Lloyd, from HHS, said in a statement to STAT. “HHS will continue to use the best scientific evidence available to improve the health of all Americans. HHS also strongly encourages the use of outcome and evidence data in program evaluations and budget decisions.”

Not only Lloyd he not deny that there was a banned word list, but he himself did not actually say two of the banned phrases, instead talking around them. Lloyd could have easily said “HHS will continue to use the best science-based evidence available…” or to say that “HHS strongly encourages the use of evidence-based data…” And yet.

The words we use drive funding, manage expectations, even constrain who we think about and include. This ban is nothing more than an assault on reproductive rights, equality, and quite literally, diversity.

MOGA.

What’s With NASGOF2 and House Ferret?

NASGOF2IsComing

If you’ve been watching my Twitter account, you’ve undoubtedly seen my parody of Game of Thrones over the last week: NASGOF2 is Coming/NASEM. And if you’re a Game of Thrones fan who works in or around gain-of-function/dual-use research of concern, then you likely giggled and nodded and probably planned to if not be at today’s meeting, at least watch it live on the internets.

If you’re a dual use person who isn’t familiar with Game of Thrones, I can’t help you—I don’t watch the show, either. All I know are the memes from the first season’s “Winter is Coming” advertisements, and I happen to both have Photoshop and be married to a fan of the show who is also one of the dual use experts. So when he offered his suggestion (instead of what I was working on), I jumped.

What was this remarkably funny suggestion? The profile of a ferret, because ferrets are what started this all.1 And because we’re talking the flu, naturally, the ferret is licking it’s sniffly nose (a detail I added and I’m grateful at least one person noticed and laughed about—oddly, not the husband).

So today, the ferrets have come home to do whatever the ferret equivalence of “roost” is, and the summary of a lot of hard work, arguing, publications, and general debate will be presented in front of a divided group of people. And me. I’ll be there with my gifs and giggles, rolling my eyes at the entire process and wondering if it’d help if I just made everyone read All I Really Need to Know I Learned in Kindergarten.


The Centers for Disease Control & Hypocrisy?

Last week, the Centers for Disease Control and Prevention released a highly contentuous new Vital Signs post on women, pregnancy, and alcohol. The main message was, essentially “don’t drink, ever, if you could possibly be using your uterus to store more than endometrial tissue, fibroids, or intrauterine devices.”

Oh, nice try CDC. I see they finally changed their graphic, a week after the uproar. Unfortunately for them, the internet is forever. This is the original, infuriating, graphic.
Oh, nice try CDC. I see they finally changed their graphic, a week after the uproar. Unfortunately for them, the internet is forever. This is the original, infuriating, graphic.
The impetus for the post appears to be the fact that roughly 52% of pregnancies in America are unplanned, and many women are pregnant for 4 to 6 weeks before they realize they’re pregnant; in that time, there’s the possibility of consuming alcohol.

Now, while studies don’t support the idea that mild drinking while pregnant will harm a fetus, the CDC (and many commentators) have latched onto this rather ludicrous THE RISK IS REAL DON’T TAKE ANY RISK approach for alcohol and pregnany, even going so far as to say it’s not worth risking a single IQ point.2 Let’s say we accept this fearmongering approach, ignoring the lack of scientific support for the assertions, ignoring the victim-blaming nature of the infographic,2 even ignoring the fact that the CDC conveniently forgot not only a man’s role in conception but the damage drinking can do to sperm and how that can affect fetal development.3 Any risk is bad. Wrap pregnant women up in cotton, leave them in a padded room, and don’t let them do anything in case they happen to be in the process of 9.5-odd months of gestation.

Really don’t let them smoke, right? I mean, the risk is real! Smoking while pregnant can cause fetal death, low birth weight, preterm birth, affect the integrity and function of the placenta, is a risk factor for sudden infant death syndrome—oh my gosh! This list is just as bad, if not worse, than the risks of pregnancy and drinking for fetal alcohol spectrum disorders. Certainly with the release of new data on the risks of smoking and pregnancy—completely separate from the other known risks that smoking has on health, such as cancer, emphysema, chronic obstructive pulmonary disease, and death—the CDC has created an equally dire infographic and message saying that the risk is real, so quit smoking, why take the risk?

Yeah, nope.WaitWhatYoureKidding

We didn’t even get an infographic.

Instead, we got a very sensible, calm, factual question-and-answer style statement from the CDC explaining how smoking can harm a pregnancy and baby, the number of women who smoke while pregnant, benefits of quitting, effects of second-hand smoke, and further resouces, with various facts hyperlinked within the article itself.

It’s almost an ideal example of how to present facts about a risk in order to allow women to do an analysis of the situation based on their own agency and autonomy.

The CDC did everything right this week with their publicization of new information about smoking and pregnancy data and risks. As Sarah Richardson and Rene Almeling noted in the Boston Globe on Monday, “[w]omen are constantly bombarded with advice about what to eat and drink and how to behave during pregnancy,” and rather than add to the growing list of simplistic injunctions of an “omg if you do that you will kill the baby” variety, the CDC provided pregnant people with credible information about how to weigh reproductive risks.

And yet. And yet. In the light of last week’s NO RISK IS ACCEPTABLE message regarding women and pregnancy, it’s a stark difference in approach and messaging, and both underscores the hypocrisy of their “ABSTAIN OR ELSE” message regarding alcohol while further damaging their credibility as a trusted source of health information and regulation.


Richardson & Almeling on the CDC’s Pre-pregnancy & FASD “Guidelines”

Although it’s not the first thing you learn in ethics, the idea that you’re not going to be popular probably should be; it really does make life a lot easier. After all, a large part of the job of the ethicist is to be unpopular:

  • no, you can’t modify that flu virus so that it’s more contagious and more deadly than the lovechild of smallpox and the Spanish flu;
  • yes, it’s okay that this person wants to die;
  • no, you can’t just put fecael microbes in open brain wounds;
  • sorry, no, the science doesn’t support your claim;
  • who will the car hit;
  • you fired everyone NOW;
  • does the benefit justify risk; and so on.

You get the idea.

So I wasn’t terribly surprised to face the typical backlash when I noted just how unscientific, shaming, stigmatizing, and plain wrong the CDC’s recent “treat every woman4 as pre-pregnant”2 declaration that no person with a uterus should drink3 unless 100% certain there’s no uterus-crasher in residence was—but it’s always nice when folks who have the respected PhD after their name (and are at Ivy League universities) join the chorus.

I recommend reading Richardson and Almeling’s op-ed in it’s entirety, but here are the choice pieces:

The CDC’s overly broad advisory damages its credibility as a source of clear, balanced advice about health risks. A risk may be “real,” but it may not be large or well substantiated. The CDC claims that “drinking any alcohol at any stage of pregnancy can cause a range of disabilities” for a woman’s child.” Yet a balanced review of the scientific evidence does not support such unequivocal claims. In fact, medical research suggests just the opposite. For example, the Danish National Birth Cohort Lifestyle During Pregnancy Study demonstrated that moderate drinking during pregnancy carries no long-term risks.

CDCBeClearFirst, the CDC needs to be clear that science on the risk of alcohol during pregnancy is far from settled. Any advice about reproduction should respect the autonomy and intelligence of women by presenting evidence in its full context. Public health officials should provide perspective about the size of the effects relative to other common risk factors. And they should be straightforward in describing the evidentiary base for health advisories.

The CDC can regain credibility in this realm by providing information to women and men that details the relative risks of various behaviors, as well as the state of scientific debate regarding the evidence supporting these assessments

The CDC’s mission is to identify and address clear and present dangers to the public health. As such, their credibility is literally a matter of life and death … Issuing guidelines with all the nuance of a sledgehammer only damages the public’s trust in federal health recommendations.

There are possible risks to drinking while pregnant, and women should be told what those risks are. But they’re not clear-cut, they’re not well-understood, and there’s no guarantee that abstaining from alcohol means a baby won’t be diagnosed with Fetal Alochol Spectrum Disorder; like many disorders, it’s a diagnosis of exclusion, and the criteria for diagnosis does not require confirmation of alcohol consumption during pregnancy (and in fact, at least one paper in Pediatrics suggests that if a woman has a child diagnosed with FASD and says she abstained during pregnancy, she must be lying about her drinking habit).

But there are a lot of risks to women while pregnant, and unless you’re advcating that women be padded in bubblewrap and never let outside of a padded room while pregnant (which in itself is probably a risk for something), then pregnancy, like life itself, is about balancing risks, benefits, and rewards. In order to make decisions in an accurate risk/benefit analysis, women first need to know what the science, not a sledgehammer of paternalistic unscientific fearmomgering.


One Key Question: Why “Would You Like to Become Pregnant in the Next Year” is a Bad Idea

Note: I wrote this last year when the One Key Question initiative in Oregon was being discussed, and pitched it to an appropriate publication. Unfortunately, the editor of that publication somewhat maliciously string me along and sat on it until it was no longer timely, and it’s been sitting in my sads folder since. With the recent CDC recommitment to the notion of pre-pregnancy, I decided this should at least be published on my blog.


A “simple, routine question” advocated by the Oregon Foundation for Reproductive Health is a great way to alienate and further disenfranchise women who are childfree.

A new piece on Slate discusses one of the most alienating ideas I’ve read in a while, and I wrote about the Hobby Lobby SCOTUS decision last week. In a nutshell, it argues that for effective and proactive reproductive health care needs, primary care physicians should ask a woman, at every visit, if she would like to become pregnant in the next year.

OKQOn the surface, the One Key Question Initiative, by the Oregon Foundation for Reproductive Health, may seem like a good idea. Many women have access to a primary care provider, but do not see OB-GYNs with any regularity. And of course, discussing reproductive and contraception options with a patient should be a basic of yearly, preventive, or wellness exams. The problem is not in discussing reproductive and contraception options, but instead in the framing of the question: would you like to become pregnant in the next year?

If I heard this from my doctor at every visit, I would change doctors. I expect my doctor to listen to me, and expect my doctor, after the first time I explain that I am childless by choice, to respect my decision. Asking me, repeatedly, if I would like to become pregnant in any time frame ignores my stated preference and decision. It falls into the cultural stereotype that women must want children, and that if they’re asked enough, if they get old enough, if they just meet the right man, they’ll change their minds.

Statistics indicate that I’m not alone in my desire to not have children. In fact, a third of women in the “acceptable childbearing age” bracket of 20-44 don’t have children,4 and 20 percent of women won’t have children.2 Many of these women are involuntarily childless, either for medical reasons or circumstance, but a recent survey by DeVries Global suggests that as many as 36 percent of those who are childless are voluntarily childless.3 As such, medical appointments should not be used as an opportunity to emphasize the stigma of the choice not to have children.

And make no mistake: there is still a significant stigma to choose to not have children. (One of my favorite paper titles ever is “Women without Children: A Contradiction in Terms?“) Women are judged for not having children; they are selfish, immature, refuse to grow up. The crazy cat lady has become a modern boogieman to scare women with. Headlines scream “The Trend of Not Having Children is Just Plain Selfish” (The National Post), women are assured it’ll be different when it’s your child, and assured they will regret their choice to remain child-free. Some of these beliefs are so deeply engrained into culture that women under the age of 30 have a difficult time finding doctors who will tie their tubes; a persistent, paternalistic attitude that doctors know better than women about their reproductive desires, which Slate itself covered in depth in 2012.4

We’ve had this conversation before, when 2006 federal guidelines resulted in women of reproductive age being labeled “pre-pregnant” and treated as if they could fall pregnant at any moment. As bioethicist Rebecca Kukla noted, the idea of pre-pregnancy literally treats the non-pregnant body as on its way to pregnancy, with non-pregnancy seen as a fleeting and temporary state; it also reinterprets primary care for women into reproductive care.5 The One Key Question Initiative brings us right back to the pre-pregnancy focus on what some people have dubbed “bikini medicine” – all attention on a woman’s reproductive organs first and foremost – creating a strong pro-natalist, coercive discourse about women’s healthcare, and shifting the focus to future outcomes (pregnancy and children) rather than the immediate patient at the appointment.

This is not to say that the ultimate goal of the One Key Question Initiative, to “ensure that more pregnancies are wanted, planned, and as healthy as possible,” is wrong. In fact, I firmly come down on the side of every child a wanted child, and as authors Julie F. Kay and Michele Stranger Hunter note, “about 85 percent of couples not using contraception will become pregnant in the next year, whether they intend to or not.” Primary care physicians should ask their female patients about childbearing and reproduction; the physician should know the patient preference and note that in her chart. In following visits, it’s more than acceptable to ask a woman who indicated she is not interested in bearing children if her contraceptive choice is working as desired, if there are any side effects, even if the woman wants to make any changes to that contraception. What isn’t okay is to make “would you like to become pregnant in the next year” a mandated question operating from a presumption that pregnancy is always a possibility on the horizon.