Saturday, August 16, 2014

Ebola epidemic reporting and bioethicists in the media limelight

There is a lot that is bizarre about the Ebola epidemic reporting. Journalists don't seem to be able to get the most basic facts of the matter right. Canada's CBC reported in its news program that Canada is sending a 'vital experimental vaccine' to West Africa. Well, obviously, you don't need to be a virologist or public health expert to figure out how nonsensical this claim is. There is nothing vital about an experimental agent that hasn't been tested on a single human soul.

Generally speaking, I am puzzled about the language that is being deployed widely to describe these experimental agents, by journalists, biomedical scientists and bioethicists alike. Why do we call something an 'experimental vaccine' or an 'experimental drug' (the latter I did unwittingly in my doctoral thesis - produced in another lifetime). The more I think about it, the less this makes sense to me. An experimental vaccine isn't a vaccine, an experimental drug isn't a drug. Both, at best, are chemicals hoped to be efficient with regard to a particular preventative or curative purpose. Until they are known to do that, it is manipulative to add the curative or preventative capacity to their name. Perhaps that's why princes are not kings (they're not called formally 'future king', they're called prince or princess, or whatever else, equally, caterpillars aren't called 'future butterfly' either). Yet when it comes to future may be drugs, we are less hesitant. I think this is a problem, because it leads to pseudo debates among the less well informed (i.e. most people). Framing effects are well known and if anything triggers them, this kind of misleading language does.

Example in point, I was unfortunate enough to have myself recruited for a BBC World program (I love the BBC, would never decline an invite from them). I was the 'ethics' guy on the program, there's an MSF operative, the President of Liberia, plus a 'political scientist' and African ex-pat in London whose role it was to berate the President, and a bunch of other folks. The hour-long program was moderated by one of those less well informed people. She tried to get the ethics debate off the ground by telling the world that two Americans received 'that vaccine', and what I thought of that. I was expected to go on about why not Africans etc etc. Instead I explained that the Americans received an experimental agent hoped to be therapeutic, and that today we have neither a vaccine nor a therapeutic drug. We don't even know whether the experimental agent assisted in their recovery, and we don't know whether the same agent was involved in the death of the Spanish missionary. She cut me off right there and moved on to the next panelist. At least I had fixed this minor issue of her coming into the studio not knowing the difference between a vaccine and a therapeutic drug and between experimental somethings and actual medicines.

Of course, I didn't actually get to talk about bioethical issues at all. So, was it my job to teach the basics here? I mean, it takes really half an hour on the web to get this stuff right, except the BBC staffer must have decided that that's why too much by way of preparation for an hour-long special program involving the President of Liberia! Wow.

Anyhow, bioethicists amongst my friends revelled on Facebook and other social media platforms in the number of interview requests they received, and naturally the pecking order of those media (i.e. were they important ones or so-so outfits).  To be fair, the issues raised by most of us were similar, the answers by and large in the same ballpark. It didn't take a genius to figure most of those questions out. I suspect the only disagreement we'd see come into the open would occur when it comes to deciding who should have priority when it comes to access to limited quantities of an actually working therapeutic drug. Anyhow, some got mortality figures somewhat wrong (it makes a different whether it's 55-60% or 80-90%), and so ended up in consequentialist evaluations that were somewhat off the mark due to their mistaken empirical assumptions.

Nobody questioned why this media ho-ha, and why now. One journalists from a Canadian TV news outfit (Bell owned - hint :) asked me what I thought sustained the media interest. I volunteered that 'you' are probably tired of Gaza, ISIS, and Ukraine, and so an exotic African disease ain't a bad deal during the summer lull in the news. That question didn't pop up during the interview :). Fair enough.

Very few of us questioned the utility (and jurisdiction) of the WHO 'ethics expert' panels missives on the use of experimental agents. It was very much a bioethics undergraduate output, nothing wrong with it, the tricky questions were postponed. To be filed and hopefully quickly forgotten under longish WHO URL and file-name. Mission accomplished. - In any case, it isn't within WHO's powers to 'approve' the use of investigational new drugs anywhere. None of their business. That hasn't stopped the crowd over at Nature.com and most other mass media outlets from misrepresenting this lil bit of fact. It's probably the first time that such a motherhood-and-applepie product from a bunch of guys on WHO's rolodex was taken note of by the mass media. Kinda nice for bioethics, bad news that so few ethicists were involved in producing the document, and too bad that it was such an unnecessarily rushed output. Alta Charo among others noted that the panel chose to address the easy questions and managed to come up with obvious answers, while avoiding the difficult ones.

I do wonder to what extent bioethicists should contribute to maintaining media interest in a story that shouldn't be that big. More Africans have died of other diseases in the countries in question, apparently nobody cares about this. Should we in bioethics not focus on this during interviews to put the hype into perspective? Should we really entertain journalists trying hard to 'bring this back to Canada', including fantasies about an Ebola epidemic in the country? I don't think so.

*Steps of soapbox.*

1 comment:

  1. Your concluding questions answer themselve, Udo.

    Malaria, TB (including MRD- and XDR-TB), parasitic diarrhea -- these kill thousands of Africans every day. Day after day. Year after year. Onchocerciasis, Dracunculiasis, even Trypanosomiasis -- is there a single "Ebola Journalist" who has even heard of them? Yet, they destroy more African families every year than Ebola ever will.

    So what can bioethicists do? First, learn all the relevant science. Then, do your best to humiliate the journalists who haven't. It won't earn you a gold star in their rolodex, but it might eventually save a few million lives.

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