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Philosophy – 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?

Socializing Girls Away from STEM

Sometimes, I wonder if the problem with STEM and girls and their interest isn’t that we devalue STEM to girls, but that we devalue girls and their interests.

Image via EDF.
Image via EDF.
In October 2015, EDF’s Pretty Curious campaign drew a lot of ire from scientists (mostly women), both for the name and for the content of the promotional material. You see, one of the people involved was a cosmetics scientist.

I found the outrage over the name to be a bit baffling, because while I admit I really wished to be called pretty when I was a kid, I was called pretty curious all the time (and I suspect those who’ve worked with me can attest this much is still true; I’m insatiably curious about the world). I don’t hear a slur or a gendered put-down in that; instead, I actually hear the kind of language people are encouraged to use when discussing young girls: talk about their minds, not their bodies. And “pretty curious” is definitely addressing the mind!

It almost seemed like bigger outrage came around the fact that the campaign includes cosmetics scientist Florence Adepoju. Rather than focusing on diversity, as Adepoju is a woman of color, critics focused on the fact that she’s a cosmetics scientist. Because, you know. Girls and makeup and stereotypes–nevermind that you actually need science to make makeup, and that’s part of the point of including Adepoju in the first place: she used science to study how to make makeup (her dissertation was on getting lipstick to stay on lips), and built that into a successful smallbatch makeup business for women of color.

Not bad for 24, eh? Certainly the sort of women I’d like the girls in my life to look up to, anyhow.

But she does makeup, you see. And so people jump on it for being too girly, and the message that’s sent? Well, whether it’s intentional or not, it’s telling girls (and women) that it’s bad to be interested in makeup, in “girly” things.

My cousin wanted to start up summer jewelry-making classes in an income and resource-poor area of the country; she’d provide the tools and materials and teach anyone who was interested how to make jewelry–and sneak in geology lessons via gemstones. After all, to understand the quality of what you’re working with, you need to know how it’s made. She was specific in saying that anyone would be welcome, but also that she wanted to target younger girls in her community who might feel alienated from more boisterous physical sciences summer-camp-esque classes, which are largely populated by boys in her area.

I floated the idea by some scicomm people, who were horrified. Jewelry-making? It’s too stereotypical! We need girls to go into STEM! Not be girls! Another friend is getting the similar pushback over a science-y fitness class.

It’s a very weird sort of mental holding to have, isn’t it? We can’t use science to talk about things that girls are interested in, are targeted to via advertising, will likely spend lots of money on for themselves over the course of their lives, and have the potential to be skills useful for real-life, adult, science jobs.

The examples, though, seem to me to indicate not a problem with STEM, but a problem with girls. In particular, a problem with the way society can socialize girls to be “girly,” to like makeup and jewelry, to want to stay fit, to be interested in clothing design. But instead of working to open those areas up to boys while simultaneously encouraging girls, it seems like we’ve kneejerked so far away that any attempts to frame these “girly” areas as science-and-okay-for-girls is rejected.

But I have a feeling that when we do that? We’re rejecting the girls who are interested in these areas, and not the socializing behind the girls.

4:46pm, edited to add: After I posted this, Bethany pointed out that this was a discussion going on in early January that I probably missed because I was still recovering from emergency hospitalization/surgery/death-flu stuff. So here is Jamie Bernstein’s post In Defense of Pink Science, and Shannon Palus’s post that Bernstein was responding to.

Inclusion is the Core of My “Radical” Feminist Agenda

I’m tall, I’m a natural blonde, and I have green eyes. I’m also anywhere from “pleasantly plump” to “obese whale” depending on your scale of things, and I’m invisibly disabled. Needless to say, I receive a lot of comments about my body, both directly and indirectly, on a daily basis, and am frequently reminded of how I am—or am not—valued on the basis of what my body looks like and what it can or cannot do. I “should” be thinner, healthier, ignore the people who think I should be thinner, healthier; I “should” embrace who I am, change who I am, be a ‘better’ version of who I am, achieve health at any size-the list goes on, and on, and it often seems and feels like everyone has, and feels comfortable, voicing their opinion on what my body should look like and be capable of.

Would there be any less pressure if I wasn’t fat? After all, some people might want to argue that the comments come because of my weight, and the fact that I am so close to “the ideal” for a woman (tall, blonde, fair) that if I could get get thin, it’d all be fine.

Well, Cassey Ho’s recent “The ‘Perfect’ Body” video should put that idea to rest:

And if I were thin, I think it’s safe to say that the so-called “radical feminists” would simply say that being a thin, tall, blonde, fair woman is merely contorting myself to a body approved by a patriarchal/porn culture, and criticize me for that, as well. I suppose I might get “points back” for being disabled, but who knows.

Are you getting the idea that I can’t win? Because if I can’t win—if I can’t be my normal hair colour, my normal eye colour, my normal skin colour, all of which are considered damned near ideal for way too much of the world, and thin or fat or anywhere in between-then how is anyone else supposed to win?

Playboy (yes, really) takes this on in their post on Laverne Cox’s nude photo for Allure and the frankly ugly response from “radical feminist” Megan Murphy. To quote Noah Berlatsky, author of the Playboy piece,

Murphy reacted to the photo just as Cox suggests that people often react to black and trans women ”” with disgust, prejudice and horror. In a short but impressively cruel post, Murphy sneers at Cox for attempting to achieve a “‘perfect’ body as defined by a patriarchal/porn culture, through plastic surgery, and then presenting it as a sexualized object for public consumption.”

She scoffs at the idea that trans women who take hormones or have surgery are accepting themselves. Murphy suggests that trans women are “spending thousands and thousands of dollars sculpting their bodies in order to look like some cartoonish version of ‘woman,’ as defined by the porn industry and pop culture.

My first thought, reading both Berlatsky and Murphy, is that this comes down to a question of how we define self. Berlatsky, along with most who support trans folks, seems to accept the idea that “who we are” can be a mismatch; your internal notion of self doesn’t match your external representation. For Murphy, it appears that you’re supposed to merely integrate the internal and external, and that if your internal notion of self doesn’t match your external being, that’s the fault of society for placing unrealistic notions on the external being.

Now, this notion of social expectation shaping external being is definitely accurate—if the mismatch you experience is what society tells you your external self should be and what your external self actually is. But where Murphy and most “radical feminists” seem to fall down is comprehending that there’s another option here, the one that trans folk fall in to, where your internal notion of self doesn’t match the assigned external self. When that happens, it’s not enough to say “ignore society” because the dissonance isn’t coming from society; there can, after all, be strong, physical differences between genders that have nothing to do with society and everything to do with biology.1 emp_v_obj-finalSociety might embrace fashion that emphasizes child-bearing hips, for example, but society doesn’t create those child-bearing hips. That’s biology.

But my first thought was a bit too shallow, on reflection. While this is all certainly true-Murphy and her ilk are simply not capable of dealing with the nuance of what it means on a base level to be trans-what it actually comes down to isn’t that, at all. What it comes down to is “radical feminists” not understanding the difference between sexual empowerment and sexual objectification. Which, to be fair, is a difficult concept to understand—but I don’t think I’m totally out of line to say “if you’re going to write critiques about bodies and empowerment, you’d best know what you’re talking about, first.”

I find that the cartoon by Ronnie Ritchie, posted by Everyday Feminism, really nicely captures the necessary nuance of power dichotomies (see right).

My problem with the “radical feminists” is pretty simple, and it’s neatly illustrated by the above response to Cox and a lack of understanding agency and consent: they’re drawing such a tiny, tight boundary around what it means to be feminist, that most people fail. Perhaps even more damning, that tight boundary contains body policing—something that most feminists, one hopes, would tell you is decidedly anti-feminist.

I place “radical feminist” in quotation marks because I don’t actually think they’re radical or feminist. I think that, for the most part, they’re scared women who are trying to define themselves in a way that maximizes their own power, and they do that by trying to keep it to themselves rather than share it liberally—another hallmark of what I think feminism should be about. In fact, I think that along with trusting adults to their own agency, about the most radical thing any feminist can do is include everyone.


Paternalism, Procedure, Precedent: The Ethics of Using Unproven Therapies in an Ebola Outbreak

The WHO medical ethics panel convened Monday to discuss the ethics of using experimental treatments for Ebola in West African nations affected by the disease. I am relieved to note that this morning they released their unanimous recommendation: “it is ethical to offer unproven interventions with as yet unknown efficacy and adverse effects, as potential treatment or prevention.” WHOsOnFirstThere are, of course, the common caveats about ethical criteria guiding the interventions, but ultimately the recommendation has saved me from a tortured “WHO’s on first”-style commentary.2 I’m sure we all appreciate that.

But just because the WHO recommendation follows what I’ve been arguing for the last 10-odd days doesn’t mean that the argument is actually over. In fact, as far as I can tell, it’s just getting worse, where worse should be interpreted to mean “even more people coming out of the woodwork to argue about ethics when they don’t have any familiarity with ethics.” Granted, Twitter is full of sample bias, but still. It is for this reason that I think it’s still important to post this statement on the ethics of providing unproven interventions that my husband (a real life bioethicist) and I worked on last week. We were side-tracked by needing to actually verify the science behind ZMapp, as well as the additional hands-throwing-up of hearing that ZMapp was provided for a Spanish priest after various US public officials stated there was none left to give.2


Paternalism, Procedure, Precedent
The Ethics of Using Unproven Therapies in an Ebola Outbreak

A “secret serum.” A vaccine. A cure. A miracle. With the announcement of the use of ZMapp to treat two Americans sick with the Ebola virus with apparently no ill effect, the hum and buzz on social media, commentary websites, and even the 24/7 news cycle, has become one of “should the serum be given to Africa? Will it?” The question has dominated for more than a week, and become something that the World Health Organization feels it needs to address by convening a panel of medical ethics experts to offer an analysis of what should be done.

And the general question about untested cures/vaccines in the event of a disease pandemic is an important one; there are already guidelines for what kind of treatments can and will be made available during a flu pandemic, and it seems quite sensible that a guideline be developed for all potential pandemic pathogens. However, it isn’t a question that is relevant in the current context, because we are already past that.

While people may be stating “should the serum be made available?” that’s not the question being asked.
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Pre-Postshow, A Quick Explanation of Induction and Black Swans

A black swan from Vacha reservoir, Bulgaria. By Kiril Krastev.
A black swan from Vacha reservoir, Bulgaria. By Kiril Krastev.
Thanks so much to my guest, Dr. Janet Stemwedel, for chatting over a much-too-short hour about philosophy of science, science, knowledge generation, Commander Data and more. I’m having audio issues tonight with playback, so I’ll get a post-show recap with links up Thursday morning. Until then, here’s a link to Janet’s website, and a link to the recording of the show.

…so why is there a picture of a black swan illustrating this? It’s a phrase I used when Janet and I were talking about Karl Popper, deduction, and induction. I hand-waved at the black swan philosophical problem, which is a problem of induction that illustrates the role both our ignorance about what we don’t know and our own biases play in shaping the questions that we ask and the answers we assume are right. The concept of a black swan is old (Juvenal references one), but until 1697, European countries used the metaphor of a black swan to indicate something that did not exist (‘all swans are white’ being a “well-known truth”).

Why until 1697?

Because in 1697, Dutch explorer Willem de Vlamingh discovered black swans, in Australia.