Observations and inanities by a second-shift assistant supervisor in the Puppy-Grinding division of the Evil Atheist Conspiracy® (our motto: "Sure it's cruel, but think of the jobs!"), your host, Brent Rasmussen.
Testing...testing...
There's a very good piece in today's New York Times titled Facing Life With a Lethal Gene about one young woman's decision to be tested to see if she carries the gene for Huntington's Disease.
It is a very difficult decision to be tested for a genetic disease which you may have, and for which there is no known treatment (let alone a cure). If you test positive, you know exactly the sort of future you face. And, if you test positive, it can have a significant impact on your employment and insurance possibilities, even decades before you might experience any onset of symptoms.
There is a similar disease which runs in my family called Machado-Joseph. In terms of statistics, there is about a 68% chance that I carry the gene for it, though I do not have the other familial characteristics which seem to track with the disease. So I have elected not to be tested. Besides, at nearly 50 years of age, if I did have the onset of the disease, it would be likely that it would progress so slowly that I would die of something else (the younger the age of onset, the more rapidly the disease progresses).
Anyway, I recommend you read the article. Because as the science of genetic testing develops, it is likely that at some point you will have to make a decision about whether or not you are tested for either a genetic disease or a predisposition towards some type of health problem. Better to consider the matter before being confronted with it. Trust me on this.
Jim Downey
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Government should get involved here. They cant *force* people to be tested, or prevent the carriers breeding, but they can give a bit of support - starting by covering the full cost of testing for anyone who has a family history of any testable genetic disease, and the cost of IVF and PGD for anyone who tests positive. Also, offer them sterilisation - no reason to take a chance on accidential pregnency. Make sure its reversable at least for IVF purposes.
And give the pope a poke. He should make an exception to the church's total (and almost totally ignored by its members) ban on contraception and IVF.
There - the chances of the dud gene reproducing are reduced to very little, and all without any infringement of human rights at all.
Cat: Next plague? My money
Cat: Next plague? My money would go on either a newly mutated form of influenza (Possibly a mutated H5N1, but if not there will be another potential strain eventually) or a very drug-resistant terburculosis.
On testing: With the widespread availability of tests, these conditions could be all but wiped out within a generation or two. All thats needed is to tell the potential couriers (identified by family history) very clearly that having children the natural way may be a Very Bad Idea, and make sure they have tests. And if they test positive, and still want children, use PGD to make sure the dud gene isn't passed on.
H5N1 plague
With bird flu in general the media has hyped it up to the point where it seems like more of a threat than it actually is. The thing about birds is their immune system doesn't have the adaptiveness that mammel immune systems have, so there is less pressure on pathogens to mutate quickly. As you can no doubt argue this doesn't matter as much if it gets into the human population (as chicken pox did centuries ago), and you'd be right. The other difficulty would be that at this point in time avian flu infects mainly farmers who work with tame birds. So far the hosts have all died quickly and without passing the virus on to other humans. Contrary to certain people's information avian flu is being transported from one region to another primarilly through domestic fowl, it's distribution does not match migration routes or timing of migration in wild birds.
Drug resistant TB is a much more real possibility. My money's on the irony of having a bacteria that we could treat 10 or 20 years ago with penicillian or one of its dirivatives coming back to bite us. My bet would also be that, in the US at least, it will eventually become more dangerous to send someone to the hospital for a serious injury than to keep them at home because of antibiotic resistant bacteria colonies.
why be afraid?
The way I see it if you get tested early and know you have a genetically inherited disease like that you can then take precautions to prevent your kids from getting it (or simply not have kids). If you keep denying that a disease exists it will inevitably spread (well, unless it's so lethal it kills the host before it can be passed on, in which case it won't last long). Look at the way AIDs has spread in places that stigmatize the disease. Another thing you can do if you know you have a serious genetic disease is specify what you do and don't want done with you, rather than letting your next of kin decide for you.
Reading what you'd written on your book (I tried reading it, it's not bad but it's not good enough to compete successfully with the stuff already stuffed into my leisure time) I feel it's weird that the disease would cause sterility in the F1 generation, although diseases that cause sterility in the F0 generation aren't unknown (my grandfather had mumps courtesy of my mom's little sister). For that you'd need to have the parents that weren't sterile be carriers and transmit the disease in utero (for that matter it would have to mutate so it could no longer be transmitted through casual interactions between people). Avenger (anime) has a similar premise, on Mars the people suddenly stopped being able to have children (the reason given was the typical "because they became disconnected from their planet" type) and as a result constructed androids to look like the children they couldn't have (then used them for slave labor). The result is that one child is born to a woman living outside the domes (although Mars has been terriformed to the point where the outside atmosphere can support human life the domes still simulate earth-type conditions) gives birth to a child who is the first martian (she has pink hair to match the sky). You're right though that humanity's about due for a plague (based on historical records we've actually been due for a major one for a few decades now), my friends and I were betting on whether it would be AIDs (mutated to pass by some more casual mechanism than body fluid to body fluid), malaria, anti-biotic resistant bacteria or something else.
Matter of perspective.
Well, Cat, I think that this may be a generational thing, or perhaps a matter of perspective based on life experience. Yours is the first generation growing up with the technology of genetic testing already in place as you come of age. For those of us who are older, this is new and somewhat threatening - it seems to be an invasion of privacy to many people. And as this technology is further developed, one's genetic disposition will become increasingly determinative for what jobs or health care you can get. From your perspective this may not seem to be limiting, but for anyone who has been in the job market or who has struggled with the vagaries of health insurance & care, it is a *huge* problem.
And "simply not having kids" wasn't really that big a decision for me, but for many people this would be phenomenally painful - just ask any couple who have struggled to become pregnant or lost a child to a miscarriage. My friends who have been through this were traumatized by the experience.
Jim Downey
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Like Science Fiction? Read my novel, Communion of Dreams, for free.
that's true
For people my age the idea that what you put on your website/myspace account can affect how easy it is to find a job is the thing that seems weird/intrusive. It's true that I'm dissapointed that someone would refuse someone a job or give them bad healthcare treatment based on genetics. On the other hand as a woman of childbearing age statistically I am already more likely to be passed over for a job or given poorer health care (my favorite, the "*pat on the head* poor thing, maybe if you didn't stress so much the problem would go away" reaction) than a man. I had been under the impression that there were laws preventing employers from discriminating against people with disabilities in the work force, but perhaps enforcement of those laws should be better.
I do understand the decision to not have kids is painful (it goes against the instictive drive to reproduce). That's why I support things like testing fetuses for lethal genes and aborting the failures, test tube babies, figuring out how to re-write the genetic code of an embryo during the earliest stages, and other stuff that scares the pants off the fundamentalists.
Huntingdon's disease
Several years ago I worked with a woman who had Huntingdon's disease; early stages, of course. I rather liked chatting with her; it was evident she had some kind of disability but I didn't know she had that disease until she came around to tell me she was going on permanent disability before her disease made it impossible to spend any time with her family at all.
It's a very strange feeling, talking to someone with a disease that will gradually, inexorably turn them into a vegetable. One doesnt't know what to say. I exchanged a few emails with her after she left, but always felt I should have done more. The terrifying part is the fear that it's catching - which is absurd with Huntingdon's but then, fear is not rational.
I've seen this horror first hand.
I've seen this horror first hand, lived with it in my family. After the death of my parent (other causes) during my early adolescence, my sister and I went to live with an aunt and uncle. Shortly thereafter, my aunt had the onset of MJD. It took about 15 years to kill her, her body wasting away as her mind became trapped in a shell which could no longer communicate.
When her son (my cousin, whom I came to regard as a brother) had the onset of the disease, he decided that he wasn't going to go through that...and before he lost the ability to make a determination about his own life, he committed suicide. I always considered it that he too died of the disease.
As I said in the piece, I don't have most of the other familial markers which seem to go with the disease in my family, and at my age it wouldn't be the same horror as it was for my other family members. But I do know that my mother carried the gene, and statistically there's a 2 out of 3 chance that I have it. Anyone who blythely says "oh, I'd get tested" without considering the full ramifications of what that would mean hasn't seen the horrors up close and personal, hasn't been truly tested by life yet.
Jim Downey
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Like Science Fiction? Read my novel, Communion of Dreams, for free.
Further thoughts...
...on this post, and how it all ties in with my novel, are available on my Communion Blog, if you're interested.
Jim Downey
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Like Science Fiction? Read my novel, Communion of Dreams, for free.