Whenever the FDA or some other government agency issues a statement about direct-to-consumer genomic sequencing (or genotyping), a minor skirmish in the science bloggysphere erupts. On the one side are medical and public health professionals, while on the other are human geneticists and genomic scientists. And then there’s the Mad Biologist, being our usual pain in the ass self, having worked in both areas.
I sympathize with the DTC group. There’s a good opportunity here to collect a lot of data relatively cheaply and make those data accessible to a wide range of researchers. If you’re a researcher used to dealing with IRB and other regulations, this is a godsend. Right now, most, if not all, of the people getting testing are at least somewhat ‘genetically savvy’ (a disproportionate number of customers are biologists or related to one). It’s ridiculous to worry about people misusing these data, beyond the obvious privacy issues.
But the public health side of me, like the hedgehog, knows one very simple thing: people are fucking morons. If there is a way to screw something up, or misuse it, they will. And regulations and guidelines, unless enforced ruthlessly, will not be followed (just look at how poor hand hygiene can be by hospital staff, who know better). People will also succumb to fear, even among the supposedly well-informed (e.g., hospital staff who refuse to get the influenza vaccine). Fear makes people stupid and cruel: in 1987, not only was Ryan White, an eleven year-old hemophiliac who contracted AIDS via blood transfusion, suspended from school, but his house was
burned down shot at by his neighbors. Here. In the good ol’ U.S. of A.
Which brings us to a recent episode in San Francisco (boldface mine):
…school officials believe his genetic makeup means he is a health risk to some of its other students and ordered that he be moved to another district middle school 3 miles away.
Colman carries the genetic mutations for cystic fibrosis – but his doctor and parents say he does not have the disease. His parents, out of an abundance of caution, made the disclosure about his condition on a medical disclosure form when he began the school year.
The district – also out of an abundance of caution – decided that Colman would need to change schools seven weeks into the year because other students at Jordan have cystic fibrosis.
While the disease is not contagious, the bacteria those with cystic fibrosis carry can be dangerous to people with the same disease, and non-siblings are advised to stay at least 3 to 6 feet away from each other….
While Colman carries the genetic mutations, he has never had the classic lung problems, has never required treatment and tested negative on a sweat test, the definitive diagnostic tool, his parents said Thursday….
If a child has a normal sweat test and doesn’t have classic cystic fibrosis pulmonary issues, “that child is at absolutely no risk to the children that have classic cystic fibrosis,” said Dr. Dennis Nielson, UCSF chief of pediatric pulmonary medicine and head of the UCSF Cystic Fibrosis Clinic. Nielson has no specific knowledge of Colman’s case.
Like I said, people will behave stupidly and fearfully, despite our best intentions. Something to keep in mind the next time this debate flares up again (and it will).
My biggest surprise is finding out that someone can be homozygous for a cystic fibrosis positive allele and not actually have the lung issues associated with cystic fibrosis. But now that I’ve looked I see some alleles may not have lung dysfunction (R117H, for example) or that some compound heterozygotes may not show lung dysfunction but may exhibit other symptoms.
Considering that the individual apparently has something along these lines where his CF is simply not manifesting in the lungs, there should not be a reason for segregation.
However, while it’s easy to compare this to burning Ryan White’s house down, segregation is a common practice for people with CF based on their bacterial colonization. The concern in this CF case is for transmission of bacterial infections to the other student at the school with CF. It isn’t as big a concern with P. aeruginosa (although transmissible epidemic strains are popping up) as it would be with Burkholderia cenocepacia or B. multivorans. Once an individual becomes colonized with Burkholderia, their prognosis worsens, sometimes significantly in a very short period of time.
I’m not really sure a policy based on limiting the spread of potentially/eventually fatal infections amongst disease sufferers of a known and well characterized disease is really comparable to burning someones house down because you’re scared of some mysterious thing they have that you’ve never heard of.
Again, if the individual doesn’t have the lung conditions associated with CF, then I can’t see a valid reason for segregation.
“Fear makes people stupid and cruel”
That’s a safe bet, and it assumes that they weren’t that way to begin with. Most of us aren’t all that nice underneath, even within Our Group. Personally, I blame Original Sin, which of course, was The Woman’s fault. You’ve got to have someone to blame. Still it’s often surprising how decent people can be that you would never expect to be. Good Samaritans, as it were. We’re very odd that way. I’m not sure where I was going with this, so I’ll just stop now…
But then there is that other fear – fear of lawsuits…
Check the facts. Ryan White’s house was shot at, not burnt down. Yea “Ray’s brothers’ or someone else’s, you get the point”. The point I get is that this is an article with inaccuracies.
You’re right. Shooting at an eleven-year old HIV-infected haemophiliac’s house is cool, then?
Then “you get the point”, just as foreseen,
You probably confused him with the Ray brothers of Arcadia, Florida. Similar story, but with arson.