This morning I woke to a tweet from Andrew Rambaut, for whom I have deep respect. He is one of the people I call grownups, the trained professionals who understand what's involved in dealing with the outbreak of a new disease. Compared to the grownups, the rest of us Flublogians are mere gawkers, commenting on the progress of the fire but with no real idea what the firefighters are doing.
Andrew was responding to my complaint about the lack of detail in the Saudis' reports on MERS cases:
Re: privacy. It is a pity that the age and gender are being reported - these are the least useful and most identifying traits. ... If a unique ID and broad age categories used then perhaps detail about places, contacts, exposure - would be more useful.
Ian Mackay came (sort of) to my defence:
Age bands sound like good idea for privacy but is imprvd privacy really the hindrnce for otherwise patchy & slow #MERS data?
These are important issues, both ethically and politically, and they deserve far more than a couple of tweets. So here, hesitantly, I offer my own response.
One of the greatest health hazards we face is not this or that virus or bacteria, but our fellow-humans' response to our falling ill with it. Evolution, I guess, taught us to avoid people who get sick, whether or not they're related.
But we're not in the Pleistocene any more, and we are learning, slowly and painfully, to save ourselves by saving our sick. The painful part comes with what we now call "stigma" -- not an actual wound, but a mark of shame, a blaming of the victim for being sick. It's hard to save someone you both fear and despise, so the victim of the disease must bear a greater burden.
In his satirical novel Erewhon, Samuel Butler long ago mocked this attitude. In his New Zealand Utopia, people find no shame in committing a crime, but can't bear admitting to illness. Sooner than say he'd caught a cold, an Erewhonian would say: "I was off stealing a pair of gloves."
Stigma is responsible for many millions of HIV/AIDS deaths (and Uganda's new anti-homosexuality law, if President Musevene accepts it, will kill thousands of Ugandans all by itself). Here's a case where evolution seems to be working against itself: To pass along our genes, we want to mate with very sexy persons who will give us sexy offspring. Yet we profess to be appalled by sexy behaviour, and especially when it leads to a disease like AIDS.
In the case of MERS, however, we have no idea how it's contracted. Perhaps a few Arabs, like American cowboys and their horses in old Hollywood movies, would rather kiss their camels, but I doubt it. Nevertheless, contracting this bizarre new disease has invoked stigma on the victims, and thereby made it that much harder to understand the disease in the first place.
When a disease becomes a public threat, privacy itself is a health hazard. You may want to curl up in bed with your secret shame, but if your secrecy is going to infect me and my kids, I'm ready to out you. And I'm not even mad at you -- you're just an unlucky victim of yet another invasion from the microscopic world. Like a soldier in combat, I'll try to drag you to safety, not blame you for stopping a bullet.
Consider the rumours of the MERS cases in Afif, Saudi Arabia. The only people who know the teacher, the principal, and the student involved in those cases are the people in that community -- and they know exactly who they are. The healthcare workers in Saudi hospitals know exactly who got sick and who died. So do the workers whose colleagues fell ill in Jordan in the first known outbreak of MERS. Privacy is irrelevant to those who know the cases.
For an old retired teacher in Vancouver and his readers to know the cases' names is also irrelevant to their privacy. One of the functions of this blog is to recognize and honour those who die of H5N1 or encephalitis or any other disease, like 15-year-old Fatima Kocyigit, who died in eastern Turkey almost exactly eight years ago. She would be a 23-year-old woman now, but she and her relatives died for our sake. We owe her and her shattered family more than an embarrassed silence.
I accept the presence of stigma in our benighted culture as I accept the presence of Streptococcus aureus and countless other stupid organisms. Privacy may give the victims and their families a little less to be anxious about, but cholera, MRSA, Aedes aegypti, and MERS don't give a shit about you or your family or what the neighbours think; to them, you're just bug chow.
So yes, let us do as Andrew suggests, and give only each MERS case's age range, and perhaps even ignore the case's sex; that can emerge in the research reports, if it's epidemiologically relevant. But let every announcement of a new case also make the point: This was not the patient's fault.