Life as an Extreme Sport

When CRISPR Evokes Fear “Gene Editing” Doesn’t

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.

For example: on Weds, there was a paper in NEJM using HIV to cure bubble boy syndrome. How? HIV was the gene editing tool. The cure was cool and new, the tool was not.

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.

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.

Latkes and a Bit of Light

It’s been a rough week. I have been able to type that almost every day this year, and have it be accurate – more on that in another post – but nonetheless it’s true. Migraines, swollen hands, skin fitting not right, irritations to the touch, lack of sleep; it’s been the entire gauntlet of everything. So on Thursday night, pretty much the last thing I wanted to do was go to a latke party. I didn’t feel well, it was going to weather, there would be not only people but strangers. I finally ended up dragging myself out of the house, naturally compounding everything by guaranteeing we’d be late.

Not the most perfect set-up in the world for an introvert, but it was and I’d committed.

One of the weirder things about my current life is just how much time I spend around people in bioethics – either because I’ve gone to a conference or I’m judging something or I’m at a meeting or, yes, even just because I’m at a latke party. I’ve been struggling to deal with that now, for years. Who am I? How do I introduce myself? Do I share The Story? How do I explain what I know and why I know it, but also why I’m not “using it” in any way most folks would consider measurable or meaningful?

For the last few years, I’ve stuck with enigma – the sort of half smile and promise to tell the details later, over a drink, bribe me with chocolate – or taking a deep breath and dumping it all out and making sure it’s clear I don’t want to talk about it, thanks. A few people have gotten the full measured story over a conversation, but not many.

It’s weird. It’s so defining. It was almost a decade ago, but it still looms large over life. It always will, as long as I’m tangental to the field, working in or near it, married to a rising star.

For whatever reason, Thursday’s latke party was different. When it came up – who am I again, why do I know all this? I was able to address the situation conversationally, even cheekily. It ended up creating a lot of laughter, a lot of sympathy, and I think at least a small measure of respect. And it got me thinking about how we define ourselves, for ourself and for others.

I read an interview today with Mara Wilson; it was published back in April but for some reason landed in front of my eyes today. It might have been the best day, because I was already mulling similar things – how do you define yourself when it feels like everyone knows who you were, even if it’s not who you are? 1 Mara left acting for writing, and she talks a bit in this interviews (and others) about her long effort at distancing herself from acting, of asserting herself, not wanting to be associated with that image.

Well. I can relate to that.

I can also relate to this:

I’m always going to be associated with that image, and I might not want to be reduced to that image, but I’m always going to be associated with it. So I’m working on embracing it.


Ends of years are arbitrary times, picked out on calendars for reasons that don’t have a lot of meaning any more. I don’t tend to place much faith in them, or superstition, but it’s hard not to think that those words landed in front of me now, just when I needed to contemplate them in front of the blank slate of a new year.

I don’t know much, and the path isn’t terribly clear – on days when one foot in front of the other is hard physically, that doesn’t make things any easier – but I do know that I can embrace the things that define me, I can be witty and charming, I can catalogue beneficial things I learned. I can laugh. And that’s a start.

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.[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 time–Ramshaw’s mousepox is probably the most famous–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 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.


Lying Liars Who Lie & the Internet is Forever, CDC Edition

What, did you think no one would notice, CDC?

Did you think no one would oh, I dunno, save the image?

Eight days ago, the CDC used this infographic in a Vital Signs post about women and alcohol:

A closer view of the top part of the image:

CloseUpOriginal

You don’t have to take my word for it, as it was the outrage heard ’round the feminist internet:

Today, that same Vital Signs post has this infographic:

CDC-changedgraphic

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,…

Liars

Click here to see the full image, including day/time stamp, if you want proof I took it today. Or just look at their website. Tomato, tohmahto.

DoYouEvenInternet

Edited to add: And Jess Beasley offers this wonderful point:

3:05 pm Addendum: Apparently when BuzzFeed calls, CDC listens, blanches, and then takes down the offending graphic. …proving that yet again, the CDC does not understand that the internet is forever.