When Transparency Is A Matter Of Life And Death
from the spread-the-word-not-the-disease dept
Against a background of the leaks about NSA spying, transparency -- or lack of it -- is a hot topic at the moment. But there are situations where it can be even more important than just a matter of enhancing confidence in government actions and acting as a check on them, as this Wired story about Middle East Respiratory Syndrome (MERS) makes clear:
The virus is new, recorded in humans for the first time in mid-2012. It is dire, having killed more than half of those who contracted it. And it is mysterious, far more so than it should be -- because Saudi Arabia, where the majority of cases have clustered, has been tight-lipped about the disease's spread, responding slowly to requests for information and preventing outside researchers from publishing their findings about the syndrome.
In fact, it's even worse than that. Researchers had hoped one new technique would allow them to track nascent epidemics and pandemics in the face of government reticence to admit there is a problem is to monitor casual online discussions about outbreaks of illness. But even that's failing here:
public-health researchers have believed that Internet chatter -- patterns of online discussion about disease -- would undercut any attempts at secrecy. But they've been disappointed to see that their web-scraping tools have picked up remarkably little from the Middle East: While Saudi residents certainly use the Internet, what they can access is stifled, and what they are willing to say appears muted.
That's a clear demonstration of how lack of transparency, when coupled with pervasive censorship and knock-on self-censorship, can have much wider implications than simply blocking the free flow of information.
Follow me @glynmoody on Twitter or identi.ca, and on Google+
Thank you for reading this Techdirt post. With so many things competing for everyone’s attention these days, we really appreciate you giving us your time. We work hard every day to put quality content out there for our community.
Techdirt is one of the few remaining truly independent media outlets. We do not have a giant corporation behind us, and we rely heavily on our community to support us, in an age when advertisers are increasingly uninterested in sponsoring small, independent sites — especially a site like ours that is unwilling to pull punches in its reporting and analysis.
While other websites have resorted to paywalls, registration requirements, and increasingly annoying/intrusive advertising, we have always kept Techdirt open and available to anyone. But in order to continue doing so, we need your support. We offer a variety of ways for our readers to support us, from direct donations to special subscriptions and cool merchandise — and every little bit helps. Thank you.
–The Techdirt Team
Filed Under: health, mers, middle east, safety, transparency, virus
Reader Comments
Subscribe: RSS
View by: Time | Thread
While it is completely insane from the Saudi authorities to deny a little more transparency it hardly translates to NSAs surveillance.
In viral research, universities and their open format prevails.
In surveillance techniques the NSA prevails.
Letting NSA conduct virus research would be ridiculous, but so would letting universities conducting the NSA-type surveillance.
[ link to this | view in chronology ]
Re:
However, people in Government are still asking for both the former and the latter.
[ link to this | view in chronology ]
Re:
Trojans, on the other hand...
[ link to this | view in chronology ]
PR exercise
However with the American propensity to squander international/domestic goodwill into a pointless, Deficit ballooning war, I doubt the important medical research will happen
[ link to this | view in chronology ]
Humans learn via suffering. This shitty censorship and surveillance momentum will only be halted when real damage occurs. Damage that afflicts those in power too.
[ link to this | view in chronology ]
Bubonic plague outbreak feared in Asia after teenager ate infected barbecued marmot...
That's transparent enough, and a known, definite, far more likely danger than MERS which doesn't have enough data yet: last I saw (due to lack of transparency) was only a few dozen cases of MERS, which could yet be mis-diagnosed and the whole thing imagined.
Point is this item is a STRETCH for "transparency". AC #1 already nailed the bogus NSA comparison.
[ link to this | view in chronology ]
Re: Bubonic plague outbreak feared in Asia after teenager ate infected barbecued marmot...
See:
http://en.wikipedia.org/wiki/Bubonic_plague
Certainly it killed many people during the middle ages...but that was due to a combination of factors which no longer apply to our modern world.
MERS, however, is a completely different beast. In case your still believe that they somehow imagined this disease, see:
http://en.wikipedia.org/wiki/Middle_East_respiratory_syndrome_coronavirus
and this (SARS is a related disease caused by another coronavirus):
http://en.wikipedia.org/wiki/Severe_acute_respiratory_syndrome
MERS is a new virus, which scientists are still trying to understand. Prognosis doesn't look too good, with a current total fatality rate of 48% (note that even in developed countries, namely France and the UK, the death rate is quite high, see the MERS article). There's no actual cure (note that, being a virus, antibiotics don't work) or vaccine. You just ride it out and hope the patient doesn't die.
[ link to this | view in chronology ]
University / Corporate partnerships are not open
Except, a Dutch University/Company has filed a patent on all vaccines and medicines for MERS after they received a sample from a Saudi researcher last year.
http://mers-virus.blogspot.com/2013/08/dutch-patent-grab-blocks-mers-vaccine.html
[ link to this | view in chronology ]
When they read the story...
[ link to this | view in chronology ]
slow spreader but >50% mortality
The saudis have pandora in a box- the secrecy will make it much worse when she does get out..
[ link to this | view in chronology ]