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Bioethics – Page 5 – Life as an Extreme Sport
Life as an Extreme Sport

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.Look at my CV. Look at Google. Piece it together.

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.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.

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,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. in my last decade and change of being publicly involved in philosophical, biomedical ethical issues: other ethicists.

No, American Doctors, You Don’t Need Tyvek In Case of Ebola

One of the more interesting aspects of the constant media coverage of the latest Ebola outbreak has been watching how developed nations like the United States, Britain, and Canada assume that the entire world is Just Like Them. The Seattle Times had a charming example of this yesterday, with American doctors questioning the CDC guidelines for how to care for an Ebola patient in America. An example of the ignorance on display comes from Tulsa, Oklahoma emergency physician Justin Fairless, who says that health care workers in West African nations

are wearing the highest level of protection, but the CDC recommendation lets us go down to the lowest level of protection.

Now, the CDC has repeatedly said that caring for patients in African nations is quite different than caring for patients in America, Canada, other developed nations, but apparently Dr. Fairless and others need a pictorial show-and-tell to understand that not everyone lives and works in a state-of-the-art world.

But first, a bit of description to set the stage for the pictures you are about to see. (Note: There are no sick or dead bodies in the following photographs.) This is from a Pulitzer Center on Crisis Reporting report on maternal/fetal care in Guinea, published in February of 2014, before the international community was aware of the Ebola outbreak:

“The biggest problems at Donka are no electricity, no water, no equipment, no sanitation and very high rates of infection,” said Bintu Cisse, adjunct midwife supervisor, who has worked at Donka National Hospital for 20 years … External support provides some operational assistance, but Donka lacks basic facilities due to the inefficiency of Guinea’s under-performing infrastructure … Inside the maternity ward operating room, Cisse pointed out that the equipment did not work and doctors used suspended basins of water and a mixture of chlorine to sanitize. The main light sources were open windows””outside garbage was burning.

Cisse is describing the largest medical center in Guniea, Donka Hospital, which is also the university teaching hospital for the country.

This is what their isolation unit looks like:

Donka Hospital Isolation Tents. Cellou Binani/AFP/Getty Images.
Donka Hospital Isolation Tents. Cellou Binani/AFP/Getty Images.

Those are tents. Here’s what those tents look like on the inside:
DonkaIsolationWard-Open

When patients are inside, they are lined up on cots, one after another. There is nothing separating the patients from anyone, or anything. There is no airflow system—isolation wards in regions where Ebola is active tend to work by setting up large barriers to prevent people from getting close enough to worry about contagion; this could be large plastic sheeting, it could be fences that indicate the line at which people should not pass.

This is what an isolation unit looks like at your average, developed world, fully-equipped hospital:

Isolation room at Wellington Hospital, New Zealand.
Isolation room at Wellington Hospital, New Zealand.

So, as you can see, Dr. Fairless, and others, things are just a little bit different in countries where the GDP is more than USD 6 billion a year.

A MSF worker suits up to care for Ebola patients.
A MSF worker suits up to care for Ebola patients.
The major difference in treatment, aside from already-discussed issues, is who is in isolation. More specifically, in places like Guinea, Liberia, and Sierra Leone, while patients are isolated from other people in order to curtail infection, the health care workers are the ones “in isolation”—they’re the ones who are kitted up in bunny suits, in full Tyvek, layers of gloves, and the whole nine yards. Because: see above. The effort here is to keep the HCW in a protective environment to limit transmission to the worker, because it’s impossible to keep the patients inside a protective environment, due to the economy, the lack of infrastructure, the lack of ability because there’s no technology, there’s no power.

Isolation units in America and other developed countries, on the other hand, function to keep the patient inside isolation; patients are isolated from others to curtail infection, and that includes being “in isolation”: that is, the protective bubble that bunny suits and Tyvek create for HCWs in Guinea, etc, is extended around the patient in the form of negative air pressure rooms and glass walls.

In that sort of environment, the basics of gloves, gown, and mask are more than sufficient to care for a patient with Ebola—or any other highly infective agent. Which is why that’s what the CDC recommendations are; because technology and care levels are different, and the basic approach to isolating and isolation can change.

It’s also worth remembering that bunny suits and Tyvek weren’t always around when people were fighting Ebola. Here’s what Peter Piot was wearing in 1976, when Ebola was first recognized:

Peter Piot wearing protective gear in Yambuku, 1976.
Peter Piot wearing protective gear in Yambuku, 1976.

That’s how the outbreak was stopped in 1976. In conditions that in many ways were worse than in the pictures shown above.

The doctors and other health care workers in that Seattle Times piece should be ashamed of themselves, demanding bunny suits and Tyvek and full protective gear when not only is it unnecessary, it’s a waste of money. But more than that, and even more than the myopic view of the world that appears to assume everywhere is just like their tidy and neat and well-staffed and well-maintained medical center, it illustrates the continued “me me me” reaction people in the developed world have around Ebola.

…after all, you don’t hear anyone suggesting that full isolation suites be sent to Guinea, or Sierra Leone, or Liberia, so that those countries can revert to the simpler CDC recommendations, do you?

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


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.
Continue reading

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.I was always bitter about the differences between book and movie, moreso than just about any other adaptation. 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.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.

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 MackayHe’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. 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.

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.As I said on Twitter last night, when Peter Piot talks about Ebola, I stop and listen. 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.“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. 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 requirementThe 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. that international clinical trials follow the requirements of the Declaration of Helsinki.Instead of providing the best standard medical care to control groups, placebos can be utilized. Smashing.) Meningitis cure testing in Nigeria, AZT trials and contraception testing in Zimbabwe;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. 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