If I’m Gonna Drop Anything, It’ll be Bricks, Not Names

I really hate having to justify myself. I hate having to roll out “credentials” and be constantly challenged on whether or not I have the “right” to discuss philosophy or ethics, or why I am actually offering a bit more than an “opinion,” or the recent favourite, that I’m not just talking about these things because my husband is a postdoc at Penn.

I hate it even more when I see how people treat Nick – even before his affiliations were made public, no one asked him to justify his credentials. No one asked if he had the right to offer opinions, and in fact, few took what he said as opinions. Oh sure, he gets the MY SCIENCE FACTS crowd, but that’s the crowd that’s arguing the validity of ethics as a field, not the validity of Nick discussing ethics.

sexistandabsurdNo one has suggested that he writes about ethics, or thinks he’s able to do so, because of who he is married to.

Some people have suggested that it’s because I don’t specifically call myself an ethicist or bioethicist in my Twitter profile, which is true. I have some issues there, and in particular I don’t want people to make the mistake of assuming I have a PhD, because I don’t.1

But that doesn’t mean I don’t have an education, because I do. I started off studying human psychology and comparative religions, and got about halfway through a dual degree when I had to relocate to another state, putting my education on hold. When I went back to school, it was with an eye towards either communication or epidemiology; I ended up in a strange interdisciplinary department at the University of Washington, the Comparative History of Ideas. My mentor had a degree in the History and Philosophy of Science, and I studied that, with a heavy emphasis in continental philosophy and anthropology, as well as medical history and ethics, in what was, at the time, the Department of Medical History and Ethics. They only offered a minor for undergraduates, but because of my major and my interest, I was allowed to take as many courses as I could, which ended up being equivalent the Master’s students.

During that time, I also started writing about pop culture and ethics for “the school newspaper” – which happened to be the third largest paper in Seattle at the time. I started guest blogging and then actually writing for other bioethics-related blogs, and I started giving invited talks on subjects I’d written on.

My thesis, which neared the length of a dissertation, was required for graduating with honors (which I did, both department and university). Relying heavily on continental philosophers you’ve never heard of, I made an argument against the primacy of autonomy and proposed an affect-centered ethic to take its place.

I went to graduate school, where I ended up writing for yet another bioethics blog. I worked in a bioethics research institute as a research assistant. I learned how to edit academic papers while working at an academic journal, where I also learned how to run an academic journal. I learned how to talk to the media, how to give interviews, how to evaluate timely and relevant topics. I learned how to write about complicated and serious issues in an accessible manner.

I also taught; I started teaching as an undergraduate, and into my graduate years. I taught basic general topics, I taught applied ethics, I taught bioethics. I taught Merleau-Ponty to freshmen and I taught medical ethics to graduate students.

Is that enough hitting over the head, or do I need to start name-dropping? After all, I learned a lot, from a lot of people, many of whom were, or are, considered the best in what they work in.

No, through circumstances, most out of my control, I don’t have a PhD to hit you over the head with when you question my credentials or my ability to talk about ethics in 140 characters. And that’s why, if you want to talk to “an ethicist” for a paper or publication, I’m happy to give you suggestions on who I think is accessible and able to talk on the subject at hand; I do understand the power of a PhD and the ability to cite an institutional affiliation. Do I wish I had that? Of course. But I also understand reality.

It's not just academia where you find this "treat a couple in the same field differently" bias; Emma Stone has spoken quite pointedly on it.

It’s not just academia where you find this “treat a couple in the same field differently” bias; Emma Stone has spoken quite pointedly on it.

Just like I understand the reality of why you question me and my ability to talk about ethics when it doesn’t even cross your mind to do the same with Nick. And it has nothing to do with his PhD, or my lack of.

Unfortunately, the fact that I even had to write that tells me that too many people don’t understand this, or the dynamics we’re working in, at all. Too many people don’t see that they will automatically accept a man as an authority, while automatically suspect that a woman can have any knowledge at all. So a situation is created where women have to be on constant defense, constantly justifying their ability to have more than an opinion.2

There is a difference between “let’s discuss” and “prove it,” one that rests not on tone or language, but on the implicit assumption that discussions happen between people with differing understandings, ideas, and knowledge, whereas someone being told to “prove it” has to meet some unknown, hidden bar of justification just to move on in to the possibility of discussion, and that the person making the demand has the qualifications to make such a determination.

And while there are situations in which “prove it” is appropriate, they are not “when the topic is about ethics and your background, degree, career are nowhere near ethics,” because you don’t have the ability to accurately judge my knowledge of my field.

You know who does?

The people I’ve never once been challenged by,3 in my last decade and change of being publicly involved in philosophical, biomedical ethical issues: other ethicists.

  1. Look at my CV. Look at Google. Piece it together. []
  2. And yes, my irritation and my experience is a small fraction of what minorities, both male and female, have to deal with in academic and professional fields. []
  3. Which is not to say there have never been loud and feisty disagreements. But see the difference between “let’s discuss” and “prove it.” I have never once felt as though I’ve had to prove my right or otherwise justify my ability to discuss ethics with other people in philosophy, ethics, and bioethics–and we’re not talking a giant happy-go-lucky field here, but one where civility is often strained, at best. []

The Flaw in “Where Did it Come From?!” Ebola Panic Narratives

I am an aficionado, if you will, of the mystery plague novel. I can probably place the blame for that somewhere between my father and the science fiction he raised me on, and Michael Crichton’s The Andromeda Strain.1 And of course, one of the key aspects of the mystery plague novel is the driving question of “where did it come from?” The thinking typically goes that if we know the plague origin, we can cure it, and a panicked rush to discover both origin and cure drives many (if not most) stories in the genre.

So it’s not too surprising to see the mystery plague origin pop up in the West Africa Ebola outbreak coverage. There seems to be a lot of concern about it’s unknown origins, how did the virus get from Central Africa to West Africa, and assertions that this must mean mutation of some sort.2

A quickly pulled together map showing the combined ranges of fruit bats mentioned in Hayman DTS, Yu M, et al., save straw-colored bats, along with the current Ebola outbreaks in West African countries.

A quickly pulled together map showing the combined ranges of fruit bats mentioned in Hayman DTS, Yu M, et al., save straw-colored bats, along with the current Ebola outbreaks in West African countries.

All of which, of course, is of limited accuracy to flat-out wrong. In fact, you don’t even need to know what you’re looking for to find this information; I was looking for an outbreak map when I came across this Emerging Infectious Diseases letter from 2012: Ebola Virus Antibodies in Fruit Bats, Ghana, West Africa. The authors of the letter found a relatively high proportion of EBOV-seropositive bats in a small sample size of mixed bat species across Africa.

Africa. Not Central Africa. Not West or South or Noth. Just Africa. Which is a big continent, but bats? They have wings. And while the EBOV-seropositive bats were largely not straw-colored fruit bats, which often migrate as far as 1550 miles/2500 kilometers, they did have a significant range.

It didn’t take terribly long for Ian Mackay3 to find a newer issue of EID reporting on testing Sierra Leone patient serum samples and finding a range of viral hemorrhagic diseases, including Ebola. Shortly after, he found a paper discussing EBOV antibodies in fruit bats in Bangladesh.

It isn’t a surprise that fruit bats are implicated in this current outbreak of Ebola, since they’ve long been considered a possible reservoir for the disease, and may also be the host. Nor is it terribly surprising that the bats have this large of a range, or even that as human settlement encroaches into the forest, there will be more spillover events. The bats, the humans moving into new habitat, the zoonotic virus spillovers; these are all part of the story of Ebola. It’s a story we’ve been piecing together for 38 years, because science is never so fast as it is in the books and movies, and it’s a story where the origin probably won’t inform the cure.

The mystery plague origin is one that appeals, and it’s easy to write. It plays into books and movies, people know the expected narration, and there’s a thrill to it; “is this the one?” as speculation for people who don’t really have to worry about if “this is the one.” It also ignores science and evidence, and turns real life tragedy into an adrenaline-based fictional story for reading before bed, erasing the victims, from that first family who died in December 2013, to those who died just a few minutes ago.

  1. I was always bitter about the differences between book and movie, moreso than just about any other adaptation. []
  2. I’m not linking because I refuse to drive traffic to bad science. It’s not hard to find the stories, if you know where to look. []
  3. He’s the real deal. If you really want to understand viruses, find a virologist to throw questions at. I recommend Dr. Mackay, but I’m biased–he answers my questions, after all. []

Ebola, Paternalism, and the Need for WHO’s Medical Ethics Review of Experimental Treatments

WHO_Logo_c300The World Health Organization has released a statement (in full, bottom of blog post) that they are going to convene, early next week, a panel of medical ethicists to “explore the use of experimental treatment in the ongoing Ebola outbreak in West Africa.” The statement goes on to say that

[t]he recent treatment of two health workers from Samaritan’s Purse with experimental medicine has raised questions about whether medicine that has never been tested and shown to be safe in people should be used in the outbreak.

It’s probably safe to assume that at least some of this statement was informed by the Wall Street Journal op-ed published by Jeremy Farrar, David Heymann, and Peter Piot.1 In particular, the authors note that it “is highly likely that if Ebola were now spreading in Western countries, public-health authorities would give at-risk patients access to experimental drugs or vaccines” and that the “African countries where the current outbreaks of Ebola are occurring should have the same opportunity.” Farrar, Heymann, and Piot also noted that ideally, the World Health Organization would assist the involved African countries with protocols for experimental treatment, research, and prevention, while simultaneously assisting with traditional treatment and containment measures.

This, surprisingly, turned out to be a somewhat controversial view, at least on Twitter. But the West is pretty enamored with the Western Cowboy Doctor who swoops in and saves the day, and there is an enmeshed culture of paternalism and rescue when it comes to how America views, or even talks about, the countries of Africa. It’s one of the reasons any effort to combat pandemics needs to be interdisciplinary; the heroic myths of one field can easily end up being the illustrative horror stories in another. In particular, the West has not been kind to African countries during outbreaks, previous Ebola outbreaks included.2 As anthropologists Barry S. Hewlett and Bonnie L. Hewlett note in their book on Ebola, culture, and politics, there is a tendency for outbreaks to only be contextualized through Western biomedical knowledge and technology. While that might have worked when outbreaks were merely local, as everyone and their grandfather has taken to pointing out, we live in a global environment, with global travel. As such, our approach to outbreaks needs to be global, not local.

There is a long and exploitive history of white intrusion into African countries, and that said history has created a culture of mistrust shouldn’t be surprising. And I’m not just talking about colonialism; pharmaceutical companies have used African countries as testing grounds for “clinical trials” that would never get off the ground in America or other developed world countries. (This was helped by the 2008 decision by the FDA to drop the requirement3 that international clinical trials follow the requirements of the Declaration of Helsinki.4) Meningitis cure testing in Nigeria, AZT trials and contraception testing in Zimbabwe;5 we’re not talking the distant past, but the past 35 years.

This is why I’m glad to see that WHO has taken Farrar, Heymann and Piot seriously, and, in a step further, that they’re going consult actual ethicists on the ethics of providing experimental, untested treatment to a vulnerable population in need, rather than just allow the status quo to continue. There’s no news yet on just who will be participating in this convention of ethical experts, but here’s hoping WHO has learned from their past mistakes and will be including a diverse range of voices with experience in the research mentioned above, the history of mistrust, culture, and of course ethics. While I’d hope it goes without saying that medical ethical representatives from the affected African countries should be present, past experience has taught me it’s best not to assume people will automatically reach for diversity over expertise. Again, here’s hoping; after all, I’d really hate to have to reach for awful WHO’s on first style jokes next week to highlight poor panel selections.

 


WHO to convene ethical review of experimental treatment for Ebola

WHO statement
6 August 2014

Early next week, the World Health Organization (WHO) will convene a panel of medical ethicists to explore the use of experimental treatment in the ongoing Ebola outbreak in West Africa. Currently there is no registered medicine or vaccine against the virus, but there are several experimental options under development.

The recent treatment of two health workers from Samaritan’s Purse with experimental medicine has raised questions about whether medicine that has never been tested and shown to be safe in people should be used in the outbreak and, given the extremely limited amount of medicine available, if it is used, who should receive it.

“We are in an unusual situation in this outbreak. We have a disease with a high fatality rate without any proven treatment or vaccine,” says Dr Marie-Paule Kieny, Assistant Director-General at the World Health Organization. “We need to ask the medical ethicists to give us guidance on what the responsible thing to do is.”

The gold standard for assessing new medicine involves a series of trials in humans, starting small to make sure the medicine is safe to use. Then, the studies are expanded to more people to see how effective it is, and how best to use it.

The guiding principal with use of any new medicine is ‘do no harm’. Safety is always the main concern.

Media contact:
Tarik Jasarevic
WHO Department of Communications
Telephone: +41 22 791 50 99
Mobile: +41 79 367 62 14
E-mail: jasarevict@who.int

  1. As I said on Twitter last night, when Peter Piot talks about Ebola, I stop and listen. []
  2. “First the French and then the Americans came up the river. Each time they took four tubes of blood, even from sick children. They never returned, and we never received the results of the tests.” Local people of Mékouka and Makokou, Gabon, discussing the rivalries between American and French researchers during the 1996 Gabon outbreak of Ebola. Taken from the Hewlett’s book Ebola, Culture, and Politics: The Anthropology of an Emerging Disease. []
  3. The Food and Drug Administration should rethink its rejection of the Declaration of Helsinki. Nature 453, 427-428 (22 May 2008) | doi:10.1038/453427b; Published online 21 May 2008. []
  4. Instead of providing the best standard medical care to control groups, placebos can be utilized. Smashing. []
  5. Read Harriet A. Washington’s book Medical Apartheid: The Dark History of Medical Experimentation on Black Americans from Colonial Times to the Present for more. []

Ziploc: There’s No Better Way to Protect Your Select Agent Investment

A lot of interesting testimony came out of yesterday’s House Energy and Commerce Oversight and Investigations Subcommittee hearing, which was titled “Review of CDC Anthrax Lab Incident,” but broadly covered the numerous slapstick-‘cept-it-ain’t-funny errors around dangerous pathogens research at the Centers for Disease Control and Prevention.

I don't know about you, but I feel safer already.

I don’t know about you, but I feel safer already.

For those just joining the conversation, these hilarious mishaps have included leaving activated anthrax in unlocked, unsecured refrigerators; mixing high pathogenicity avian influenza with low pathogenicity avian influenza and then shipping it over to the US Department of Agriculture in the worst version of novelty surprise in a can ever; and using ziploc bags to transport petri dishes between labs. And as an added bonus, there was some discussion about the broader issues of the proliferation of biosafety laboratories working on select agents.

In particular, the statement of Nancy Kingsbury, PhD, the Managing Director, Applied Research and Methods, at the Government Accountability office, is worth a read. The statement pulls no punches, saying:

No federal entity is responsible for strategic planning and oversight of high-containment laboratories. … No one agency is responsible for determining the aggregate or cumulative risks associated with the continued expansion of high-containment laboratories; according to experts and federal officials GAO interviewed for prior work, the oversight of these laboratories is fragmented and largely self-policing.

In fact, since 2001, the proliferation of biosafety laboratories has resulted in nearly 1500 laboratories in the United States alone that handle and do research on dangerous pathogens.

If only there were some sort of national advisory board for biosecuri-oh wait!

Except, as has already been noted, the NSABB hasn’t met in nearly two years. But that’s okay, you see; the current chair of the NSABB1 wants you to know that this is intentional! Samuel L. Stanley Jr., MD, says that the NSABB has “been waiting essentially for the new federal guidelines to come out on institutional implementation of DURC policy. We wanted to have a look at what the federal agencies would come up with.”2

PicardOneJob-200One job.

You guys had one job.

Well, wait. Okay. This can easily be clarified by looking at the NSABB charter, which was recently revised, so clearly it is timely and up-to-date and will clarif-

The NSABB will provide advice on and recommend specific strategies for the efficient and effective oversight of federally conducted or supported dual use biological research, taking into consideration both national security concerns and the needs of the research community to foster continued rapid progress in public health and agricultural research.3

Damnit.4

In Stanley’s defense, he argues that these recent “issues” at the CDC are surely concerning as a scientist, but they’re really not about dual-use or gain of function research, so they don’t involve the NSABB. It wasn’t, you see, created to be about biosafety.

It’s really such a bitch when the first bulleted item on the list of “description of duties” on your charter contradicts the interviews you give: Recommend strategies and guidance for enhancing personnel reliability among individuals with access to biological select agents and toxins.5

Funny thing. The last time I looked, anthrax sure as hell was a select agent. Oh look! So is H5N1.

Your move, Stanley. I suggest it involve picking up a phone and dialing 11 different numbers.

  1. Someone who has been the chair since 2012, so you do the math on how much practice he actually has being the chair of an organization that hasn’t met since… yup, 2012. []
  2. All of Stanley’s comments in this blog post are taken from CIDRAP‘s interview with him. Hi! Love you guys! []
  3. “Objectives and Scope of Activities,” NSABB Charter 2014. []
  4. Fun bonus note: the NSABB is, per their very own charter, supposed to be meeting twice every fiscal year. Should I give Stanley the benefit of the doubt to assume this is new with the 2014 charter, and that everyone would have loved to have met in the previous two years, but there just wasn’t anything going on in dual-use or gain of function rese…nevermind. []
  5. “Description of Duties,” NSABB 2014 Charter. []

Becky Bird Flu and HPANTHRAPOX (Biosecurity Satire)

As any fan of The Daily Show knows, satire is often the only defense.1 2

Adventures-Biosafety

HPANTHRAPOX-Cycle

  1. Becky Bird Flu coined by Nick Evans. …I can’t pin HPANTHRAPOX on anyone, though. That one is all mine. []
  2. If you’re wondering what this is a defense against, there’s an overview here. []