Amish Genetics

Deanna wrote: How do they deal with the issue of practically everyone being related?

Deanna, this question deserves a longer answer, because it is quite complicated. In my opinion, the Amish are going to need to address this issue, because the gene pool is so very concentrated and becomes more so with each generation. It is very common for Amish young people to marry their second cousins. I had an aversion to that and vowed I never would. Yet, it seemed as though every time I dated someone, I found out he was my second cousin in some way or another (sometimes in more ways than one). 

As one can imagine, there are many genetic diseases that occur because of the concentrated gene pool. I recently heard about a couple in my home community that consciously got together from two separate communities for that very reason. This gives me hope that there are at least some Amish people aware that if they are to survive and thrive as a culture, they need to be conscious of finding “new blood.” They rarely have converts join their culture, so this is actually a challenge, especially because if someone marries a partner from outside the culture, they will be excommunicated and shunned. At least marrying someone from a different community is better than marrying someone within buggy-driving distance in one’s home community. Usually when one couple in a community thinks this way, others will follow. 

To give an idea of what kind of challenges the Amish face, I will provide several links to articles/videos about Amish genetics:

This one is about Cohen Syndrome, a genetic disorder found in my home community, Geauga County, Ohio. Click here for the Deutsch Center in Middlefield, Ohio and about Mark and Esther Kauffman and their family. Mark and Esther were two of the most beautiful young people I’d ever seen in my home community. They married and had a baby girl, who was born normal. I had already left the community by then, but my mother described how hard it was to hear this baby cry all during a church service, and how she just thought she had to do something for the poor child. What nobody realized is that she had a very rare genetic disease that caused her liver to slowly poison her brain. Mark and Esther had three more children, who all had the same disease. All four of them are now so profoundly retarded that they do not know who they are. As it turns out, Mark and Esther each carried two recessive mutated genes, which means it would have been impossible for them to have healthy children. There was a question at some point about whether they would name this disease after the Kauffmans’, because there were only a few cases in the world that resembled this one and geneticists were not sure the known cases were the same as the Kauffmans’ children. I don’t know that the disease has a name to this day. 

Dr. Holmes Morton founded the Clinic for Special Children in Strasburg, Pennsylvania. His clinic now recommends that all Amish and Mennonite children in the Lancaster community be routinely screened for 35 genetic diseases, such as Crigler-Najjar syndrome, maple syrup urine disease, glutari aciduria, pigeon breast disease, and pretzel syndrome. For a USA Today report about this, you can click here.

In both the centers in Ohio and in Pennsylvania, the emphasis is on identifying the genetic disorders and treating them. There is little or none on preventing these genetic disorders by deciding who to marry (or not) based on genetic testing. Most of the Amish believe that God will provide for them, and therefore it would be wrong to try to change “His plan.” There has been a debate for as long as humans could contemplate the issue about whether there really is such a thing as free will. It seems to me that this is about the best place to exercise it, if we do have a way of determining our destiny. 

The flip side of the Amish genetics is that there are many highly intelligent people tucked away in the Amish communities. To me it is a tragedy to see someone who highly intelligent get a mere eighth grade education. I wrote about this in a former post. Ironically, “Ervin” is closely related to Mark Kauffman. 

So the issues around Amish genetics are complicated. Because of their religious beliefs, what most of us would see as possible solutions, are not options for the Amish. Too bad — many of these diseases could be avoided, if the Amish would only be mindful of genetics when they choose their marriage partners. I understand that this would be a break from tradition, but wouldn’t it be ironic if their stubborn adherence to tradition were to eventually jeopardize the survival of their culture? 

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8 thoughts on “Amish Genetics”

  1. Your answer confirmed what I guess I already knew. I plan to go back and click on the links and learn more.

    The Amish family we have become somewhat friends with because of the time we’ve spent following up on furniture, seems to have some genetic issues, which prompted the question.

    I am glad to hear that some of the more progressive Amish are reachinig out beyond their communities for relationships.

    Your comment about the irony that their stubborn adherence to tradition could jeopardize their very culture, brought to mind an issue in my own faith. Catholic priests are not allowed to marry and cannot be women. In my mind this rule is based on tradition and has nothing to do with the teachings of the bible and yet the Church absolutely refused to go against tradition. This stubborness is jeopardizing our faith in many ways – the most obvious being we have fewer and fewer priests, and therefore fewer and fewer parishes. Down deep I also believe some of the sex scandals would never have happened if these men had been allowed to pursue normal relationships. And the fact that they are not allowed to pursue normal relationships, I believe, attracts not so normal individuals.

    As you can tell, your answer to me prompted more thought provoking thinking. You are very good at that.

    Thank you for answering my questions so fully!

  2. Wow! I’ve never heard of any of those genetic conditions. They sure did give them some strange names didn’t they. That would be so heartbreaking what that family went through with 4 children.

    I’m not Amish but my great grand parents were either 2nd cousins or 3 cousins once removed. It’s been awhile since I’ve looked at my genealogy. We had always heard that they were related but we didn’t know exactly how until I did a lot of research on our family tree and discovered the link. Mom and I think that that is why some in the family are crazy from that line.

  3. Peg, if you follow the link I provided, you will find out who Mark Kauffman is…

    Deanna, your comments about Catholic priests are my sentiments exactly — like anything else, if we repress something in ourselves, especially something as basic as having a physically intimate and loving relationship, it will almost invariably squeeze out sideways.

    I’ve often wondered why people don’t learn from others’ mistakes… don’t the Catholics realize that the Shakers no longer exist because they didn’t allow intimate or sexual relationships? Don’t they realize that the men (and possibly women) who lead their parishes would be more balanced individuals if they were allowed to have a healthy and normal relationship?

    This kind of thing always reminds me of that story about the woman who would cut the end of a roast before she made a pot roast. Her husband asked her why she did that, and she said off-handedly that she did it because her mother did it. So the husband asked the mother why she did it, and she said the same… because her mother did it. So the husband went back one more generation and asked the same question. The grandmother’s answer was simple, “So it would fit into the pan.”

    Sometimes we follow tradition long after it has ceased to make sense.

    Angela, Interesting about the ancestors in your family who were related. Imagine the intricate family trees of the Amish, where there are all kinds of relations… I know a couple who are second cousins in three different ways, for example. It is really no wonder they Amish are experiencing problems with genetics.

    Thank you for all your comments and questions.

    Cheers,
    Saloma

  4. That ws a sad story,maybe the amish will learn from their mistakes and reach out to others of their faith at a farther distance,this was sad. Blessings jane

  5. In the area I grew up in genetic disorders are more common too like within the Amish as people were pretty isolated and cousin marriages were very common (including first cousin marriages). Even though this has changed since about 1920-30s the disorders are still there. It is not that easy to stop this either as they can run in the family for a long time and not come up if two families are not ‘relinked’.

    I know of two people who met and had children and had no idea that 6 generations back they were related and their child got a genetic disorder which fortunately is not fatal or leads to any significant problems if it is treated. The doctor who diagnosed the girl said instantly ‘Do you live in X village?’, they said no. ‘Do your relatives originate from this village’ The woman said ‘yes’ and the man said ‘not that I know of’. The doctor said that he could bet quite a lot of money that they did and it turned out to be right. Appearently almost everyone in Sweden who get this disorder originate from this particular village and in the end they are all related although some at a long distance such as the people I know. What do I want to say by this? Well, even if the Amish would take bigger steps to try to prevent genetic disorders it might still be very hard.

  6. I started wondering about something while reading about the Amish using “taxis”. Then after reading about some of the genetic problems in the Amish community I started thinking about it even more. Do none of the Amish think that it is contradictory or even hypocritical that they are willing to take advantage of or benefit from the English people? It doesn’t seem like most of them have any problem going to a doctor to get medical help, which I am happy for. But those doctors and researchers would have never been able to help anyone with an 8th grade education.

    I know this is not a very good comparison. But it’s the best I could come up with. I don’t think of it as a sin to shop on Sunday. I just don’t do it because I don’t feel it is right. I have a friend who does her weekly shopping on Sunday but I would NEVER ask her to pick up something at the store for me on Sunday. In my mind that would be the same thing as if I had gone shopping on Sunday.

    Donna

  7. Pingback: About Amish | Amish Genetics

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