Would you marry someone like this?

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  • #611499
    popa_bar_abba
    Participant

    Would you marry someone who is a carrier for all of:

    Tay-Sachs disease

    Familial dysautonomia

    Cystic fibrosis

    Canavan disease

    Glycogen storage disease (type 1)

    Fanconi anemia (type C)

    Bloom syndrome

    Mucolipidosis (type IV)

    I mean, your kids won’t have the disease, but they are going to be carriers of of many diseases.

    And that will constrain who they can marry, since they won’t be able to marry someone who is a carrier of any of those. Do you really want to constrain your kids like that? Isn’t the shidduch market hard enough?

    And there may be some people who aren’t carriers, who may choose not to marry your kids, because they ARE worried about constraining their kids shidduch prospects. Are you worried about that?

    And there may be some people who aren’t carriers, who may choose not to marry your kids because they are concerned for the other non-carriers who won’t marry because of the other people who won’t marry. Are you worried about that?

    Nah, it’s all narishkeit. Why worry? It’s just your kids shidduchim. And probably it won’t be a problem. We’ll just rely on the probable, right?

    #1020961
    HaLeiVi
    Participant

    Sure it’s a problem. And that’s exactly why it is kept a secret.

    #1020962
    ☕ DaasYochid ☕
    Participant

    How about relying on Hashem? I don’t think rejecting someone with recessive genes is normal hishtadlus, although if they both do, then it is normal hishtadlus.

    #1020963
    nonikname
    Member

    how bout checking on their personality?

    #1020964

    I wouldn’t mind marrying someone like that as long as they didn’t use paper on Shabbes.

    #1020965
    ☕ DaasYochid ☕
    Participant

    Nonikname, would you say that if they were both carriers?

    #1020966

    I wouldn’t mind marrying someone as long as they aren’t you with that attitude.

    It’s all min ??.

    It won’t accomplish anything to worry about things that are far off and in Hashems hands.

    Chas v’shalom- one might STILL have a ill child or grandchild even if you hand pick using in-vitro:

    Hashem wouldn’t give you a test you can’t pass.

    #1020967
    HaLeiVi
    Participant

    DY, that is an overly idealistic, unrealistic answer. Is this really less than Davar Meguna?

    #1020968
    Menachem Melamed
    Participant

    If you have an understanding of biology and medicine you would know that most people have at least 1 or 2 significant genetic defects. It is quite possible that the person who shuns a carrier has a more serious defect himself.

    #1020969
    Menachem Melamed
    Participant

    Incidntally. I highly doubt that there is anyone in the world that carries ALL 9 of those genetic defects.

    #1020970
    ☕ DaasYochid ☕
    Participant

    HaLeiVi,

    To me it is. If there was a 5% chance of an affected child, saying I’m relying on Hashem might mean I’m being unrealistically idealistic. But there’s a 0% chance.

    #1020971
    nonikname
    Member

    DaasYochid- yeah i would.. before all of this testing people got married to people because of their personality and I think a lot of the way things go with jewish dating is wrong.. like a resume is this a job interview?

    #1020972
    writersoul
    Participant

    PBA, my point on the other thread was that they have the genes whether or not other people (or even they themselves) know about it- anyone who discriminates based on that would just be ignoring the fact that they probably have the same number of these mutations.

    However, to prevent this thread from turning into the last one, I’ll sit back let the scientific reality get mangled.

    Okay, looking back on the responses, Menachem Melamed knows his stuff. This is a moot point.

    Chances are, whoever you marry (if he/she an Ashkenazi Jew by heritage, even on one side) has at least one of these mutations. They don’t affect you. They only have a 25% chance of giving a disease to each of your kids in the worst case scenario.

    You’re turning these into bogeymen.

    #1020973

    You have to trust in Hashem! Of course you should do your hishtadlut, but you can’t start being worried that you’ll restrict your KIDS’ chances of getting shidduchim!

    Speaking of which, you know how around sukkos, pesach time all the magazines add these huge “literature books”?

    So I’m not sure if it was the Binah, Mishpachah or Ami magazine, but one of them had a story about a sheltered bais yaakov girl and how she got involved with a “no goodnik” (lol i can’t think of another word, sorry!) but she only broke up with him because he refused to take seriously that they weren’t a “genetic match,” and at the end of the story you see her happy because she married someone who didn’t carry those diseases and she was able to have healthy kids.

    That story rubbed me the wrong way. Does anyone know what story I’m talking about?

    #1020974
    writersoul
    Participant

    It wasn’t Mishpacha, because I didn’t read it, but why did that rub you the wrong way? I guess I’m missing something.

    Like I said in the other thread, though, having a lot of genetic mutations of this kind probably indicates yichus. Just a funny thought, because that would mean it would HELP shidduchim. Not practical, but weird.

    #1020975
    Torah613Torah
    Participant

    It would have to factor into the decision. I’m happier not knowing.

    #1020976
    ☕ DaasYochid ☕
    Participant

    It would have to factor into the decision.

    It really shouldn’t

    I’m happier not knowing.

    Since there are people who think the way you do, I agree that it’s better that it’s unknown.

    #1020977
    BachurTzvi
    Participant

    Hi i am a bachur with crohns and i would just like to let every1 know one thing..WHATS WRONG IF YOUR KIDS HAVE CROHNS?? I thank hashem all the time for giving me crohns, it make you appreciate and enjoy the little things in life so much more. Plus it has made me so strong i can honestly say i am a better person by 10 times since i had the zechus to fight crohns…So u ask will u date some1 like me? I answer, if u have to debate i wouldnt want to marry YOU…

    #1020978
    🍫Syag Lchochma
    Participant

    BachurTzvi – awesome answer! I feel the same way.

    #1020979
    BachurTzvi
    Participant

    Thank u..

    #1020980
    miritchka
    Member

    BachurTzvi: +1!!

    Many years ago, many people died or suffered tremendously from these diseases. Most (if not all) of these diseases came about due to both parents being a carrier. Hence, Dor Yesharim was born. Although there are still a large number of people affected by the diseases mentioned above, many many many more have been avoided due to the work of Dor Yesharim.

    #1020982
    🍫Syag Lchochma
    Participant

    I believe that getting checked is necessary hishtadlus. I also believe that if you think that the reason you are getting checked is to “make sure” that you have healthy children then your belief in Hashem is sorely lacking. So is your understanding of physiology.

    #1020983
    The little I know
    Participant

    Heard from a surgeon who is a baal teshuvah:

    “I refrain from performing elective plastic surgery because I feel that I am tampering with Hashem’s creation. Hashem granted us the scientific advances that allow us to treat illness and injury. But to alter the existing because of preference is outside of my domain due to my belief in Hashem.”

    Following this logic, past generations that lacked the ability to identify recessive genes required only bitachon in Hashem. Today, we must do the hishtadlus for which He gave us the capability.

    I think refraining from testing is foolish, and entering those shidduchim with known incompatibility is not bitachon but sheer idiocy.

    #1020984
    BachurTzvi
    Participant

    Sure u have to get tested..but every1 has issues so if ur not gonna marry some1 that has a genetic desiese that doesnt danger ur life is foolish..

    #1020985
    miritchka
    Member

    SyagLchochma and The little I know: I’m sure almost everyone believes that one should get tested (at least I hope) However, you dont have to know what you are a carrier for. Doing your hishtadlus could very well mean having the blood test and going though an organization like Dor Yesharim to see if both sides are compatible.

    On the flip side, I always had this question: When someone does check to see if both the girl and boy are compatible, wouldnt this be considered a lack of bitachon? Then again, we cant just sit back and tell ourselves that ‘its ok to marry someone even if we are both carriers’ if we have the tools to prevent sick children or miscarriages or children dying at a young age. ???

    #1020986
    OURtorah
    Participant

    I don’t belive you shouldnt marry someone just because they are a carrier, even more so if you arent a carrier and they are you are giving the other person a chance to have kids who aren’t. And frankly, you arent cutting your children’s chances of finding a shidduch down because now they won’t be compatible with a certain group of people. Hashem has an ultimate goal. I would marry them if they were a good person. We all have flaws, is that to say your wouldn’t marry me, because my parents are less frum than I am?

    It is a silly thing, and it took me a bit to realize that, but it is. Hashem has a greater plan.

    #1020987
    farrockgrandma
    Participant

    Two thoughts to ponder –

    1) by reducing the number of marriages between two carriers, we are increasing the number of children who are carriers and

    2) many genetic disorders are prevalent to a particular ethnic group or geographical origin, so the healthiest combinations may be between more distant groups, ie European and Syrian, Moroccan, Ethiopian.

    #1020988
    ☕ DaasYochid ☕
    Participant

    Farrockgrandma,

    1) I don’t understand why that would be the case, but even so, it’s irrelevant as long as we keep testing, and infinitely better than the alternative.

    2) Why limit ourselves to that when we have, b”H, genetic testing?

    #1020989
    farrockgrandma
    Participant

    DaasYochid – no, I was not suggesting that testing doesn’t help. As for the second, if the only goal is avoiding genetic mishaps, a more diverse population can only improve things.

    But back to the original topic, testing, screening, and family questionnaires to make decisions about marriage. You can expend a lot of effort looking for a partner with no history of problems, but there is never a guarantee. Most important is who you will share your life with.

    #1020990
    ☕ DaasYochid ☕
    Participant

    if the only goal is avoiding genetic mishaps, a more diverse population can only improve things.

    Why would anyone suggest that that’s the only goal of shidduch or marriage? It’s just one detail, albeit an important one.

    #1020991
    ubiquitin
    Participant

    DY, dor yesharim increases the carrier rate since it minimizes the chance of 2 carriers marrying each other and ending their line. Lets take Tay sachs as an example. Once upon a time in a population where by some estimates 1/25-30 is a carrier for tay sachs some would marry each other and have several of their children die Rch”l taking the “defective” gene with them. Now however virtually all carriers go on to reproduce succesfully, this however (over time)leads to an increase in the gene frequency rate.

    statistically half of a carrier’s children will be carriers as well, all will survive. If the carriers dont marry other carriers the carrier rate frequency will increase over time.

    #1020992
    ☕ DaasYochid ☕
    Participant

    Ubiquitin, I know that, but I hope farrockgrandma didn’t really consider that worth pondering.

    #1020993

    Building on the same discussion, would you marry someone who:

    Could be a carrier for which a genetic marker hasn’t been discovered yet?

    Has relatives who are dumb?

    Has a 100% chance of losing hair with age?

    Has a family history of Alzheimers?

    Has a family history of being poor?

    Wears fashionable clothing, which has a 25% chance of going against the rabbonim?

    May have once done something they didn’t tell you about?

    #1020994
    farrockgrandma
    Participant

    It is important to note that until there is an effective treatment or cure, genetic testing is more vital with every succeeding generation.

    #1020995
    old man
    Participant

    Farrockgrandma:

    Regarding your first point, researchers from a major Israeli university developed a mathematical model to predict the future carrier rate of the Tay Sachs’ gene in the case that no two carriers ever marry. The result was that yes, the carrier rate will increase , but will take at least 500 years for it to be worth any consideration, and even then the effect will be miniscule.

    Regarding your second point, you are absolutely correct, diversifying the gene pool is extremely helpful in reducing the incidence of genetic diseases.

    #1020996
    mewho
    Participant

    more important…do they have an i phone?

    that is the deal breaker

    #1020997
    Torah613Torah
    Participant

    Regarding your first point, researchers from a major Israeli university developed a mathematical model to predict the future carrier rate of the Tay Sachs’ gene in the case that no two carriers ever marry. The result was that yes, the carrier rate will increase , but will take at least 500 years for it to be worth any consideration, and even then the effect will be miniscule.

    This is correct. Genetic testing does not increase the carrier rate enough to have a significant effect on genetic disease.

    Even if it did, having one recessive gene often confers health benefits.

    Carriers of Cystic Fibrosis are more resistant to cholera, typhoid, and tuberculosis.

    Carriers of Tay-Sachs and muscular dystrophy have a higher IQ.

    Carriers of some genes for deafness are more resistant to bacterial infections and have better cell repair.

    #1020998
    ☕ DaasYochid ☕
    Participant

    T613, that’s fascinating. So the question really should be, “Would you marry someone who is NOT a carrier?”.

    #1020999
    popa_bar_abba
    Participant

    Carriers of Tay-Sachs and muscular dystrophy have a higher IQ.

    Than the general population, or than the population which is known to have high incidences of tay-sachs….

    #1021000
    🍫Syag Lchochma
    Participant

    Carriers of Tay-Sachs and muscular dystrophy have a higher IQ

    I don’t know if that is true or not but coincidentally the children I have worked with who have MD have all been very bright kids.

    #1021001
    🍫Syag Lchochma
    Participant

    DY – I had the same thought for a minute there.

    I would much rather marry someone who is a carrier than marry someone who is a jerk. Any testing being done for that?

    #1021002
    writersoul
    Participant

    T613: I read a really interesting book that postulated very similar things about the origins and even benefits of many recessive mutations. It’s called Survival of the Sickest. Great book and very interesting.

    (Funny thing, after reading it I was talking to a doctor about it and we agreed that it was shticky, derivative and not exactly “scientific” but he confirmed that the information was scientifically founded. So I think of it as kind of Malcolm Gladwellish in that vein. Still a fascinating read, as are, admittedly, Malcolm Gladwell books.)

    The fact is that there are only a few rare diseases that manifest themselves at all in carriers. Some, actually, as T613 says even benefit the carrier- according to that book, carriers for sickle cell anemia have a greater chance of surviving malaria than non-carriers.

    ubiq: As everyone else said, if it is true that 1/25 are carriers and there’s a 25% chance that a child of two carriers will have Tay Sachs, then the odds of any one family (two carrier parents, 1/25 x 1/25) having a Tay Sachs child (1/4 per child) were still pretty remote on a global level. On an individual level it’s obviously terrible, which is why we test at all, but in the long run, as you picture it, there’s really not much of a difference.

    #1021004
    Sam2
    Participant

    My Rav Paskens that it’s Assur to get genetic testing (Bimchilas K’vodo, it’s the only ridiculous Shittah that I’ve heard from him). The first thing I did when my Rav told me I can Pasken most Shailahs for myself is get tested.

    #1021005
    oomis
    Participant

    If someone is a potential carrier for a disease that WILL, if inherited as a disease, subject his/her child(ren) to pain and suffering from birth, that person needs to think long and hard about getting screened and ensuring that the spouse is not likewise a carrier. It is completely irresponsible and CRUEL, IMO, to knowingly bring a baby into the world to suffer, IF that suffering can be avoided by NOT MARRYING the carrier of the same genetic disease that you carry. Clearly our Jewish leaders agree, or Dor Yesharim would not exist today.

    #1021006
    Torah613Torah
    Participant

    So everyone agrees with me that it’s a factor that should be taken under consideration.

    Sure, being heterozygous might be an advantage, but you have to weigh that against the effort and expense of checking every possible child in law. And there are better ways to get those advantages. I’d rather my child marry someone who is smart and not a known carrier of Tay-Sachs, for example.

    Basically, I think our current system is optimal. We prevent the expression of disease without letting it factor into the decision.

    writersoul: There’s plenty of evidence for this. PubMed is a good resource for finding studies, or one can google heterozygote advantage to read it in a more entertaining format.

    #1021007

    Being a carrier of genes is less worse a problem than carrying bad middos. If the guy has a good heart, and a clear torah head, then yes I would marry them. Life is short, chances of cropping up a kid with genetic deficiencies are slimmer than not. Hashem is in charge. You just pray.

    #1021008
    ☕ DaasYochid ☕
    Participant

    So everyone agrees with me that it’s a factor that should be taken under consideration.

    No, I do not agree.

    #1021009
    writersoul
    Participant

    T613: Yes, I know, I was just recommending that particular book :). And I wasn’t clear- when I said only a few diseases manifest themselves in carriers, I meant only a few diseases manifest themselves *negatively* in carriers. Many do provide a heterozygous advantage.

    DY: Why?

    ARWSF: The chances of picking a random guy off the street who has the same carrier status as you is, as you say, somewhat slim. However, if you do marry a guy who, against the odds, IS a carrier, that’s a 25% chance that EACH kid will have the disease.

    Rabbi Ekstein founded Dor Yeshorim after four of his kids were niftar from Tay Sachs. They test only for debilitating and life-threatening diseases, and if the odds are really so slim that the guy you want to marry will have the same carrier status as you, then what’s the harm in checking?

    #1021010
    ubiquitin
    Participant

    Torah613, I most definitely do not agree with you!

    In fact for a while it bothered me that Dor yeshorim doent disclose information, They have a virtual monopoly on genetic testing in the heimishe community and then insure their survival by withholding information that I believe I have a right to know. I could not understand the harm in revealing carrier status to the carrier. Do they think we are that stupid that we cant understand High-school level biology?

    But from you response I see how wrong I was, so thank you

    #1021011
    ☕ DaasYochid ☕
    Participant

    WS, au contraire, why should recessive genes be taken into account if they’re not both carriers?

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