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Isn't it pretty?

Monday, March 19, 2007

Knowing What the Future Holds

Being newly committed to being a cultured and up-to-date person, I was perusing the NY Times yesterday (yes, on my day off!) and I came across this article about a woman who undergoes genetic testing and discovers that she has the gene for Huntington's disease, a neurological disorder that truncates one's life and debilitates a person's quality of life due to the death of brain cells.

The woman featured in the article voluntarily underwent this genetic testing to find out whether she would develop the disease. The introduction to the article asks "If you carried the gene for a fatal genetic disease, would you want to know? Why or why not?"

To me, this is similar to the idea of Dor Yeshorim testing that many Orthodox Jews undergo in order to determine whether a potential spouse would be genetically incompatible with someone else. The way this testing is done is that you don't find out whether you are actually a carrier for a disease, but only whether both you and the person you are checking on are carriers, and therefore extremely likely to pass genetic problems on to your children. This is not as much of a predictive test as was discussed in the article, but they are similar concepts.

I've never been registered with Dor Yeshorim. I am very uncomfortable with the idea of, what seems to me, to make the attempt to predict what will happen, or avoid what may or may not happen. The idea of saying whether two people are compatible based on their genetic makeup just doesn't sit very well with me. I know the arguments - that you might as well avoid the heartache of having to deal with such horrible diseases and suffering in one's children, but I guess I just look and see that there are so many things that happen that can't be predicted and it seems weird to me to even try.

So, going back to the NY Times article, would I undergo such testing so I would know what my future holds in relation to a disabling genetic disease? It's different than in the Dor Yeshorim testing, because this is an absolute predictor. The woman who underwent the test found out that she would develop Huntington's disease and the test even gave her an estimated age at which it would begin to surface.

I understand the desire to want to prepare oneself and make the time one has left before developing such an illness as full and rich as possible. But the fear and dread that one is left with every day until the symptoms start really appearing - and the suspicion that every little pain or sniffle might be leading to it - I think that wouldn't be worth the knowledge. The fact that you would be waiting for it, without even having the option of thinking that maybe it wouldn't strike - to me, that would make my quality of life diminish.

Maybe it's because I'm not really a worrying type. I don't worry about so many things. I don't really live in fear of much. I even had to be trained to lock my doors (though I now do lock them) because I just don't have that quality that seems to lead people to fret and be scared. But to me, I wouldn't want to know. I would hope, and do hope, that I lead my life to the fullest I can without such an ominous future ahead. Because you never really know what's going to happen anyway.

I don't know, maybe I just like to cover my eyes and not see the reality of what life can offer. But I would rather be blind and live life each day without knowing what will happen the next. Would you want to know?

9 Comments:

  • Shoshana, the genetic testing that DY does does not necessarily lead a black and white decision to not get married. It just gives you more options.

    We are friends with a family who has a child with Familial Disautonomia. It is a terrible, incurable, Jewish genetic disease. Unfortunately when they got married a test for FD was not yet available. Having found out the hard way that they are both carriers, they were able to have more children through in-vitro to make sure that their kids are not born with the disease.

    By Blogger e-kvetcher, at 3/19/07, 11:35 AM  

  • I would think that everyone would want to live his/her life to the fullest. Not to be morbid, but that woman who tested for Huntington's disease could die in a car crash tomorrow. My point being that life is not predictable and you should live every day to the fullest.

    By Blogger SaraK, at 3/19/07, 1:16 PM  

  • I'm with both E-K and SaraK. Personally, I *did* Dor Yeshorim; some people we know went to the hospital and got tested for free (though to get tested for some of the things you need to pay). While there's a lot to say about it doesn't matter, or shouldn't matter, etc., when it comes down to it, it really does matter. In the short run, yes, a couple can think it won't matter or shouldn't matter, but in the long run? The difficulties involved in raising such a child are so tremendous as to break apart even the best of relationships, not to mention how much it would affect their lives.

    OTOH, if a couple has been dating for a long time (say, HS sweethearts who are finally getting married) and likely won't change their minds, they may be better off without the stress of knowing. My friend did not get tested before marrying his girlfriend of almost 10 years... and I think that was wise.

    By Blogger Ezzie, at 3/20/07, 4:37 AM  

  • i know a family who lost a child from a genetic disease, one that could have been avoided.

    i visited that child in the hospital, watching him in his little bed. his only mitzvah were his tzitsis. it is a sight i will never, ever forget. Now the father campaigns rigorously for couples to get tested.

    the proper thing is to check each others "numbers" BEFORE dating. either it's shayach or it's not. some couples check later on, but that can lead to potential heartbreak. (i also know of a couple who checked and were found genetically incompatible. they went ahead and married - and had children who died from diseases that COULD HAVE BEEN AVOIDED.)

    you may say "i don't want to know," but think of your children. is it fair to make them suffer?

    hashem has *given* us dor yeshorim. it is a keili for brocha.

    (p.s. i saw the huntington girl's article. oy va voy. i'm with you on that one - that is something i would NEVER want to know.)

    By Blogger Maven, at 3/20/07, 11:16 PM  

  • e-kvetcher -
    I hear that. Unfortunately, that is not how the test is used these days - it is used as a make-it/break-it decision about whether or not a couple should date or get married. In that kind of scenario, I think it is absolutely a positive thing.

    Sara -
    Exactly.

    Ezzie and Maven -
    Why should these tests be used as a reason to get married or not? Why aren't they used for, like e-kvetcher pointed out, to open up other options? Is a couple truly incompatible and therefore, without the need to even date, just because a DNA test deems them so? Why not take that information and use it to lead to the possibility of adopting or using in-vitro, or something like that? I don't think that you can say a shidduch is not shayach based on a genetic profile.

    By Blogger Shoshana, at 3/21/07, 8:49 AM  

  • shoshana,

    genetic compatibility only refers to genetics. a couple could be compatible in every other way. however, if a couple is incompatible genetically (which could/should be determined beforehand), why bother with all the rest?

    this is why it's done PRIOR to dating. there are many, many other fish in the sea. you don't really know the person anyway, so what's the loss?

    i don't think your adoption or in-vitro suggestion is realistic, considering all this can be avoided beforehand. besides, the many complications of adoption and in-vitro (halachic ones as well) must also be considered.

    i think you are getting carried away with idealism.

    respectfully,
    maven

    By Blogger Maven, at 3/22/07, 11:05 AM  

  • First off, I would not want to know if I would develop Parkinson’s in the future. Genes are a POTENTIAL not a guarantee. And even if it’s 100%, who needs mental anguish to waste the few good years left before the disease's onset?

    A single gene can code for different activities at different points in a person’s life and even at the same point but under different chemical,environmental conditions (or within the presence of different genes). Just because we marry someone without the Dor Yesharim top-10 doesn’t mean that the combination of our two genetic codes can’t result in anomalies or defects. I do favor avoiding marriage of two carriers of Tay-Sachs etc but I’m realistic that humans can’t account for all contingencies nor can they plan the perfect result. Even genetically manipulated embryos are going to surprise us with the outcome. Maybe we’ll get the blue eyes we checked off but the pinky finger will be noticeable shorter or a propensity towards sleep apnea will increase. Who knows? Remember how killer bees got started? Try to introduce a desired quality genetically and God (or just plain genetics) will have a real ‘treat’ for you.

    If two lovers find they are carriers of a debilitating disease, they must be honest about their mental wherewithal to deal with the enormity of the stresses awaiting them. A life of misery may very well be what is in store.

    (Shoshana and others have raised very good points, all worthy of consideration).

    Now a full 180: Follow your heart when it comes to love and marriage, not science.

    By Blogger smoo, at 3/27/07, 12:19 PM  

  • Maven -
    I think "genetic compatibility" is kind of a misnomer. There are no guarantees when it comes to genetics. And there is no guarantees that, even if you "pass" the test, that you won't have problems.

    Smoo -
    I agree with much of what you are saying. I just think there are so many options these days that a couple shouldn't necessarily use genetic tests as a make-it or break-it determinant. As for your last line, the truth is, I don't think I could do it another way. But that's just me.

    By Blogger Shoshana, at 3/27/07, 10:45 PM  

  • Wow. That is one interesting story, and the intelligent comments really bring it out.

    At the risk of being repetitive, since others have said this already, I think Dor Yesharim testing is very different than this story.

    Dor Yesharim, as some others have pointed out, is meant to prevent people from getting involved in a relationship that is very likely to end in pain. Most leaders of the orthodox world today, who are always very firmly in favor of life and opportunity, support Dor Yesharim -- this says a lot about the situation, that's how hard the situation is for people who suffer from these genetic problems. If you haven't seen it, it's hard to describe the suffering. The children born with these illnesses-- of course their life is valuable, of course they were brought to this world for a purpose. But it is wrong to choose it. We pray every day that HaShem shouldn't test us -- but the choices we make often determine our tests, and we don't choose nearly as well as G-d.

    Choosing not to marry someone because you are genetically incompatible doesn't mean you won't (G-d forbid) have a seriously ill child. The ways of G-d are many and varied. But we are required to put forth our effort in all worldly matters, to try not to make things any harder for ourselves. We're not trying to play with fate; just to do our efforts in the right direction, knowing that the results are in G-d's hands.

    So, yes, I have been tested by Dor Yesharim.

    As for the Huntington's test, I can see why a person would want to know, but ideally I would think they're better off not knowing. If a person starts to believe they know the future, they'll start living their life accordingly. Not only does this demonstrate a severe lack of faith -- what if it turns out to be wrong. Anything could happen. "Knowing" that one will die from it and when, will hold a cloud of doom over the person's head, probably lead to all kinds of psychological problems, including difficulty forming relationships and reckless behavior in the supposed last years because-- why live healthily, tomorrow she'll die. If it turns out true, what was gained? Some perspective, perhaps, valuing each day, but anyone's neshama could be taken on any day. And if it was false, what a waste of worry. And, as someone else mentioned, she could die in some other way at any time.

    I'm not saying it's inherently wrong to try and predict this, but it seems dangerous to me.

    Literary classics are full of stories of people who tried to outwit fate, self-fulfilling prophecies, and other related themes. While I don't necessarily agree with all their messages, they were written with a deep sense of understanding the human nature and they describe well the complexity of the issue.

    By Blogger Bas~Melech, at 3/28/07, 2:17 AM  

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