I’m seeing this NPR CIRSPR trials article going around, with comments ranging from the relatively mild “here we go” to the more typical doom-and-gloom engineering humans into super-race/extinction/X-men/choose your X-related catastrophe. And while the Editas one (still) concerns me—I don’t think the tech is where it needs to be, and I don’t believe anyone will stand up to the founders of Editas because of who they are–I, overall, am not at all fussed about these trials. Why? Well, take this Penn cancer study. It’s not like this is NEW. The tool, CRISPR, is, but it’s just changing the kind of tool being used for gene editing. We’ve been gene editing for disease treatment for a while now.
But because it lentiviral gene therapy, not CRISPR, no one blinked, even though it says “gene therapy” in the very title of the paper.
CRISPR seems to evoke a strange panic with people; fundamentally, people are treating it as if it’s some kind of new thing. It’s not; it’s just upgrading your college student knives to a really nice German set after your first big adult paycheck.
*Content modified from a comment originally published on Damien Williams’ Facebook.
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:
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.
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 youâ€“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.[note]Ron Fouchier and Yoshi Kawaoka published a series of experiments passing H5N1 through ferrets, ultimately making it very, very transmissable and very, very deadly. While DURC/GOF studies have been going on for a long timeâ€“Ramshaw’s mousepox is probably the most famousâ€“this whole brouhaha can really be traced back to 2011/2012. You can read the start of it here.[/note] 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 aboutâ€“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.
Today, that same Vital Signs post has this infographic:
And to further add insult to injury, they’re trying to pretend that this is the way it always was. See, the CDC actually has a little count down at the bottom of the page that’s supposed to change when they update things, and yet,…
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.” 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.[note]Which makes me wonder: really? Given we know that socioeconomic status can affect significantly more than a solitary IQ point, would the recommendation be not having children if you’re below a certain SES? Hmm.[/note] 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,[note]Someone abuse you while you drank? WELL WHAT DID YOU EXPECT? …yeah, the CDC went there.[/note] 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.[note]Designer Chris Giganti kindly provided an updated graphic for men.[/note] 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 syndromeâ€“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 pregnancyâ€“completely separate from the other known risks that smoking has on health, such as cancer, emphysema, chronic obstructive pulmonary disease, and deathâ€“the CDC has created an equally dire infographic and message saying that the risk is real, so quit smoking, why take the risk?
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.
Freedom of speech does not mean freedom from consequence.