by Michael S. Kaplan, published on 2007/12/14 10:16 -05:00, original URI: http://blogs.msdn.com/b/michkap/archive/2007/12/14/6770461.aspx
Not about a familial legacy of working for Microsoft, this is a 100% Multiple Sclerosis post with nothing from an internationalization perspective, technical or otherwise....
I have really been following the whole HealthTalk series for Multiple Sclerosis for a few years now (I have the monthly programs on my Zune, mainly under the theory that even if an issue does not apply now it could always apply some day!)
Anyhow, yesterday Phillip De Jager, Ph.D. did an interesting live podcast with a Q&A after entitled MS and Genetics: Will I Give My Child MS?. The description was:
Knowing that they could pass MS on to their child, some people with MS are either avoiding having children altogether or feel conflicted about doing so. How can you make an informed decision?
Join us for an in-depth discussion of genetic influence in the development of MS. We’ll review what is known about the combination of genes believe to be involved, the statistics on the occurrence in multiple family members and the opposing ethical views that cause some people with MS to build a family, while others hold off. Experts will also cover the latest updates on using genetic information to help screen for or cure MS.
Conventional wisdom from the past always pointed out how Multiple Sclerosis was much more common between siblings than between parent and child, though over time they have found a definite tendency that can be passed on genetically.
Current studies have put some concrete numbers in sharp relief:
He also discussed studies in both New York and San Fransisco to collect genetic info to learn more about this (something I might sign up for), as well as the need to be wary about private firms that offer "genetic testing" for people.
My interest in having children is theoretical at this point (just as it is for De Jager, we both self-identify as being somewhat part of the CF movement, though for me it is more because of this genetic issue than what usually leads people there), but even a non-parent like me knows that if one wants to have children that even though it is still unlikely to pass MS on that the simple fact of it being 30-40 times more likely one will can be more than enough to make one less than eager to risk doing so.
These stats clearly relate to diagnosed MS, which is a slightly lower rate than the actual occurrence (with some cases so mild that they are only found accidentally during an autopsy)
I definitely don't want to make a pro-eugenics argument here (which is what this view becomes if taken to its logical extreme). But I still have trouble ignoring the facts here, and would really not know how to explain it to my child if they later got MS.
I imagine if I were in the situation, I'd want to move somewhere to minimize the chances based on the environmental component that plays a[n apparent] role in converting the tendency to an actual case of MS anyway.
Anyway, this is all mildly depressing to think about, even though the fact that I am currently 37 and not romantically involved with anyone wanting children really does make it (as I said) much more of a theoretical issue. But I do hate being told I don't have options independent of the fact that I have limited options, if you know what I mean.
You can go to MS and Genetics: Will I Give My Child MS? if you wanted to hear the broadcast yourself, or you follow links off that page to other archived broadcasts....
This post brought to you by ፴ and ፵ (U+1374 and U+1375, aka ETHIOPIC NUMBER THIRTY and ETHIOPIC NUMBER FORTY)
Tom on 14 Dec 2007 11:21 AM:
I've thought about this issue personally. My mom has a form of MDA, and after I got married, she asked me whether or not I would decide to have kids based on the possibility that I might pass the disease genetically to my kids.
I quickly dismissed even the possibility of not having kids at the time, but since then I have had plenty of time to think about it. I guess for me the bottom line is that prospective parents have no way to, in general, guarantee the health of their children, genetically or otherwise. And I don't think that anybody, even the child who may inherit a disease, has any such expectation.
Thinking about my mom, would it be better she never lived since she had MDA? No way, of course (although I'm slightly biased!). She has so far lived a good life, had a family, accomplished a lot, and although she has to cope daily with her MDA, when you look at the big picture of her life, it's mostly positive. And I would feel the same if/when I develop symptoms of the same disease.
For me, my wife and I have 3 children now, each one totally wonderful, totally special. Having kids is a heck of a risk in a lot of ways, but with huge rewards as well.
Michael S. Kaplan on 14 Dec 2007 9:52 PM:
There's the rub -- it is so easy on the other end of it to be one of the children who would have never had the chance to grow up, pointing out that life is filled with risk anyway.
But would one have one's children play in traffic? Or encourage them to play Russian roulette? Or would one want to maximize their chances for success in the world?
I am not claiming to have answers -- because I don't. But I'd be tend to be suspicious of anyone who does, as it is a hard problem...
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