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bioethics – Life as an Extreme Sport
Life as an Extreme Sport

Bioethicists, ASBH2020, and a Lack of…Well, Ethics

As some people are aware, I have been off the internet since the end of September, when a novel health issue required I begin a (relatively long) diagnosis process. Part of that diagnosis process is minimizing stress; I was ordered to stop work almost immediately, told I couldn’t expand my physical therapy past what I was doing, and had it strongly suggested I stay off social media. A “limited stress diet,” as one of my physicians put it.

Acrylic painting of blue and pink trees reflected in water.
I’m learning acrylic painting, in addition to watercolor and inks. This is my third piece.
I’ve gone through a bunch of tests, and am in the “do they need more tests?” wait and see portion of the diagnostic process, which has also brought with it a new and exciting medicine regimen. All of this should be familiar to anyone who has endured diagnosis by exclusion–or trial and error.

So all said, I shouldn’t be writing this. It is, after all, the internet. But I’m hoping the lack of interaction with others makes this more like YouTube, which is “okay,” and less like Twitter, which is decidedly interactive and not okay.

And what I definitely should not have done? Check the American Society for Bioethics and Humanities annual meeting program. Very little good can ever come from that, although a lot of irritation certainly can–and in my case, a lot of irritation can have a pretty seriously negative health impact right now. So let me be the first to say: I should have listened to my doctor.

But I didn’t. Instead I browsed the program, got pretty irritated at quite a bit… and then found an ASBH session that at least on the face of it appears to be lifted from a conversation I had with an author earlier this year about my objection to their recently published paper, based on an entire body of literature the authors were unfamiliar with. A body of literature I provided references to. Including the faculty profile page of the researcher behind that body of literature.

There was no courtesy FYI; no “hey, would you like to be involved;” “hey, do you mind if I;” no nothing. I wouldn’t have known about it if I hadn’t stumbled across it… which, I guess may qualify as actually ironic, and certainly belongs with a Jagged Little Pill. And while it is certainly possible that the panel was someone else’s idea and the bioethicist I spoke to about it was approached independently, if that happened to you, wouldn’t you at least say “oh hey, I should totally let the person who brought this novel idea to my attention know about all of this, just so they don’t think I intentionally left them out”? Or is that just me and my weird insistence on giving credit where due?

As salty as I am–no, as hurt as I am that someone I thought I could trust would do that to me, would ask why I objected to something and then take my explanations for their own benefit–I can’t even pretend that this is the first time this has happened. THIS YEAR. It’s like the 5th or 6th. It seems that while journal editors don’t want to publish my ideas when they come from me, they are perfectly happy to publish them if it comes from a Name. And these Names don’t appear interested in asking if I’d like to work with them, and can’t even be arsed to thank me in acknowledgements. Honestly, I question why I even have extended trust in the first place–after all, if I learned anything in 2008, it’s that people in bioethics will put their careers first, and should absolutely not be trusted, to any degree.

There seems to be only one solution here, and that’s to stop discussing my bioethics-related ideas with bioethicists. Unfortunately, DMs and eMails certainly aren’t proof enough for theft of ideas accusations–there’s a reason I’m not naming names here–and so my best bet, if I want to continue engaging in public acts of bioethics, is blogging here where there’s at least a public timestamp …or just not engaging in bioethics publicly anymore. Because let’s be honest, I’m not sure a blog post in the public domain would stop people from taking my ideas and passing them off as their own.

A rather telling commentary about bioethics as a field, isn’t it?

When CRISPR Evokes Fear “Gene Editing” Doesn’t

I’m seeing this NPR CRISPR 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.

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.


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.