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.1 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 I hope that having this information out there–on why yes, it is ethical to provide unproven interventions in pandemic situations–is useful for answering the questions people who don’t have much background in ethics may have, as well as getting into the cultural zeitgeist for discussions not only about future pandemic situations but also discussions about disparate treatment of people from the Developed vs Developing World.3 [Cross-posted at The Broken Spoke.]


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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  1. For other commentary on the committee composition, see Udo Schuklenk’s short, sweet, and to the point commentary; you can also read his reaction to their statement here. []
  2. After it was confirmed that the Spanish priest received ZMapp, ]
  3. Again, to clarify: This was finished on Saturday afternoon. Obviously, in that time frame, we have learned that a third Westerner was given ZMapp, it was released to two West African doctors, and WHO’s medical ethicspanel convened and–pleasantly–reached the same conclusion we did. This is merely a more detailed argument for the release of unproven interventions. []

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.

Virtually Speaking Science: Science, Philosophy and STEM

VSSTonight on Virtually Speaking Science, I’ll be talking to Dr. Janet Stemwedel about the role of philosophy in science, philosophy of science, STEM, and knowing us, probably ethics and values and so forth.

The conversation topic was sparked by the recent Neil deGrasse Tyson comments on philosophy and science; my response to that can be seen here.

Tweet questions ahead of time to me or my producer, Sherry Reson, or ask during the show with the hashtag #AskVS. Join us! 5pm PT/8pm ET.

Contraception: The “acceptable” medical need vs “just” recreational baby prevention debate

Have you ever had that experience where you’re walking along and someone tries to hand you a religious tract, and you smile politely and say no thank you and try to keep going, but they reach out again and for whatever reason you stop, and then the following conversation happens?

“Can I tell you about Jesus?”
“Thanks, but I’m a Buddhist.”
“But have you heard the word of our lord and saviour?”
“Actually, I was raised Catholic, so–”
“Oh but that’s not a REAL Christian, let me tell you–”

And then you have to break whatever it was that made you stop, feel rude, and just walk away, because you realize that no matter what you say or do, they’re going to keep pressing because no answer but the one they want to hear is good enough?

FP_Contraceptives_225x200I often feel like that about birth control.

Almost inevitably, if the topic of birth control comes up, someone will come along to tell you that there are some really unacceptable risks to whatever birth control you’re talking about, but have you thought about these other, better birth control options? And of course, hopefully the person being this imposing is a friend (but let’s be honest, it generally isn’t) and you smile and say yes, thanks, and go back to your conversation except you’re interrupted again. “But have you tried…” and the well-meaning person goes through every birth control option they find acceptable.

In my case, since I’m utilizing a hormonal birth control (the Mirena IUS), whomever is acting critic will start asking about non-hormonal options. Sometimes, I’m nice and I’ll play along. “Yes, nasty contact dermatitis makes it not fun. Yes, with that, too. No, I don’t really trust options with failure rates that high. Yes, I’m aware of perfect vs real world use, but failure is not an option.”

Because, you see, I have that in my back pocket. Not one trump card, but two. Because even if people find my “yes, well, I was nearly hospitalized for blood loss before I had a Mirena inserted” an unacceptable medical excuse (and there are some who do), I have a final saving grace trump card, the one that says “it is medically advised that I never have children, due to my severe, degenerative nerve damage; having children could leave me permanently disabled and bedridden for life, if not worse.”

Funnily enough, that gets a pass from pretty much everyone except the very worst of the Republican politicians.

The thing is, I shouldn’t have to detail out my medical history in order to get a pass for deciding to use hormonal birth control. No one should have to detail out their medical history in order to show an “acceptable” medical need vs “just” recreational baby prevention; at most, a friend has the right to say “well, I’m concerned about the risks, are you familiar with them?” A “yes” response means drop the conversation, not run through every other birth control option out there. A “no” response means ask if more information is welcome, not immediately launch in to it.

The minute you get into dissecting out what is and is not a medical reason for birth control, you start wandering over into the territory that is labeling the choices and decisions women are making, and for hopefully understandable reasons, that makes little pro-choice, pro-birth control-as-part-of-basic-healthcare me nervous.

Are women making bad choices for themselves out there? Undoubtedly. There are shitty doctors. There are uninformed women. But taking the default position that every woman is uninformed is not the answer. No woman should have to lay out her entire medical history (or that of her partner!) in order to “get a pass” on contraceptive use.

When a woman tells you she’s utilizing birth control, don’t ask her if it’s medicinal or for contraception, don’t tell her she has better options, don’t immediately launch into the laundry list of why her choice is bad for her. We–those of us who are pro-women’s health, pro-choice, pro-birth control–are better than that.

Or, at least, we should be.

 


For a quick overview of contraception options and risks of pregnancy see this Planned Parenthood graphic.

Vogue Gives Lena Dunham the Fantastical Impossible Treatment, Somehow This is Jezebel’s Fault

While one corner of the internet was up in ire about Nature publishing bad commentary, and another was up in arms over both The Guardian and The New York Times taking out inaccurate attack op-eds on Lisa Adams, a third corner of the internet was poking fun at or flat out criticizing Jezebel for offering $10,000 for unretouched photographs of Lena Dunham’s Vogue cover. Within hours, Jezebel had several of the images, although not the one I admit I’d been hoping to see. (See above right, and click to embiggen. I’m just so curious: what was so offensive about her left arm?)

The general editorial commentary seems to be along the lines of “what was Jezebel hoping to accomplish,” along with a healthy dose of “all Jezebel is doing is shaming Dunham.” (There’s also a lot of commentary about click bait, which is kind of amusing if you think about it for a second, but I digress.) As a whole, the issue seems to be summed up as “it was okay when Jezebel did this in 2007, because they asked for any magazine cover and any woman,” (and got the rather famous Redbook/Faith Hill photoshopping), “but it’s a problem when it’s Dunham because Jezebel is making it about her body.”

With this, I disagree. While it is about Dunham’s body, that’s not Jezebel’s doing. It’s because Lena Dunham has been very outspoken about her body: not only is she fine with her non-model-ideal body, she’s fine showing it naked on television, and if you don’t like it, that’s your problem and you don’t have to look at her. It’s something you even find in the Vogue profile of her; Nathan Heller writes:

For almost as long as Dunham’s work has been in the public eye, she’s spoken openly and often about her body type, pointing out that not every strong and enviable woman on the air must resemble a runway model.

And that’s why seeing what Vogue decided to edit about and from Dunham’s body is important. Because Dunham has, at this point, spent years talking about how much she likes her body as it is, and how comfortable she is in it, and how she’s not interested in changing it to fit the social gaze. Anyone who knows who Dunham is likely has heard at least some variation on that theme at this point.

So when Dunham shows up on the Vogue cover with her neck taken in; shoulders dropped to increase the perceived length of her neck; and her face and jaw narrowed to make her eyes and lips appear larger? Yes, it’s a problem, because it sends a very mixed message: Lena Dunham is proud of and comfortable in her non-stereotypically-Western-ideal-body, so here is her body changed to conform to that stereotypical ideal.

Dunham’s explanation, as I’ve seen it, is this:

A fashion magazine is like a beautiful fantasy. Vogue isn’t the place that we go to look at realistic women, Vogue is the place that we go to look at beautiful clothes and fancy places and escapism

This is all well and good, except it’s pretty divorced from reality. There are, at this point, decades of research to show that looking at thin and ultra-thin representations of women distort self-esteem, that body image takes a hit when exposed to these unrealistic images, and that notions of the real are eventually affected.

What ends up happening is not the cognitive dissonance of “I thought Dunham didn’t have issues with her body, why is Vogue nipping and tucking her?” but one of “oh, that’s who it was implausible for Patrick Wilson’s character to have a tryst with? Guess she’s just Hollywood Homely.”

By changing Lena Dunham–a woman who, as the original unprocessed photos show, is already quite pretty without any Photoshop help–into yet another slender, long-necked, physically impossible image, Vogue manages, in a single stroke, to undermine Dunham’s message and broadcast the idea that the ideal woman is one that quite simply cannot exist.

As Clara Jeffery, the co-editor of Mother Jones notes, a retouched photo is radically different from a Photoshopped photo. When you’re creating and promoting anatomically impossible images of women and passing them off not as fantastical, as Leibovitz does beautifully in her Disney Dream series, but real and actual, then yes, there is a problem, and it’s one that’s highlighted particularly well when Vogue gives a woman who is vocal about loving her body the way it is the fantastical impossible treatment.