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Genetic Research In The Heart of Amish Country

FrenchyinOntario writes "Insular, inbred communities like the Ashkenazi Jews and Indian tribes can be a bonanza of genetic information for researchers, and the Amish & Mennonite communities in the United States are proving to be fertile ground as well for scientists who want to better understand the nature of genetic diseases and how rare illnesses occur more frequently in such closed-off communities. The Amish, famous for their renunciation of a lot of technology, are embracing a lab that has been built in the centre of their community because their faith teaches them to "help their fellow man", recognizing that helping scientists better understand the genetic causes of diabetes, mental retardation, and some of the rarer diseases in their families, helps themselves as well as others. For a better understanding of the Amish and their approach to technology, Wired magazine ran an excellent story a few years back better illustrating why they are not just mindless kneejerk technophobes."

23 of 299 comments (clear)

  1. Duh by afidel · · Score: 5, Insightful

    Of course they are not mindless technophobes. For one thing every member of the sect is given a period in late adolecense where they are to go forth and experience the rest of society before they join the church. This insures that they have made a choice that is at least somewhat informed. They are an interesting group of very deeply religious folk who have very good reasons for believing as they do. Hell one of my favorite vacations was one where I didn't touch an electronic device for an entire week, it was SO much more relaxing than any other vacation I have ever taken that I have to sometimes wonder if I wouldn't be more happy if I were to give it all up and live life in the simpler fashion of the amish.

    --
    There are 4 boxes to use in the defense of liberty: soap, ballot, jury, ammo. Use in that order. Starting now.
  2. Somewhat informed? by Anonymous Coward · · Score: 5, Insightful

    If you spent a single year living as Amish people do, then you'd want to come back here, too. They send them out with little education and little support and no friends in the outside world. Of course they are going to come back after a year. They may think they are giving people the choice, but in the end, it's adding to the indoctrination because they come back thinking that they know what it's like outside their little community.

    I'm not criticizing the Amish here. I have no doubt that they mean well by doing this, but it is not a fair way to do the comparison.

    1. Re:Somewhat informed? by aussersterne · · Score: 5, Insightful

      It's not just education and friends that are missing, either. Having grown up and been socialized in isolation from mainstream society, they possess a disctinctly different set of social skills and a different connotative vocabulary, both verbally and nonverbally.

      They lack the correctly formed tools to cope with basic aspects of the mainstream social world, things like dealing with separation and boundaries/emotional distance, the need to be assertive or to tolerate assertiveness in others, the "sixth sense" that most urban and even suburban dwellers develop about crime and dangerous situations, the expectations about what the rights/responsibilities of friendships and coupline relationships are, etc. It's not that they don't have any social tools or skills, it's just that theirs are all applicable to a very different society.

      It's rather like traveling to another country--you think it's nice to visit, but for most people, nothing feels as "comfortable" as being "home," for the very same reasons. Of course the difference is that for religious groups, visits outside the group aren't constructed as visits just to "other people" as they would be if an American visited New Zealand, but rather they are constructed as good vs. evil--you are leaving the "good" people to visit and explore the structurally opposed world of "apostates" or "heretics" or "nonbelievers," so the experience is in no way value-neutral, but rather begins with the expectation that the outside world isn't just different (and hence always at least a little uncomfortable), but that it is uncomfortable because of the presence of various kinds of evil presumed to be a property of the outside world, and conversely absent within the group.

      Thus, even for the most outgoing, life outside the community, while potentially exciting at first, ultimately seems both frightening and hollow, since nothing (including relationships and interpersonal communication) seems to respond safely in a manner that they expect, understand, or need as social beings, and they attribute this mismatch to nefarious forces.

      The problem isn't unique to the Amish, it's seen in children from nearly any intensively lived faith organized into insular communities, i.e. Mormonism, or hare krishna, etc. Even when someone decides that they want to leave the faith, life outside it can be so difficult to navigate and their methods of social interaction and personal development so dependent on its structures that it's easier just to stay inside the group as a nonbeliever.

      --
      STOP . AMERICA . NOW
    2. Re:Somewhat informed? by petrus4 · · Score: 4, Insightful

      >They lack the correctly formed tools to cope
      >with basic aspects of the mainstream social
      >world, things like dealing with separation and
      >boundaries/emotional distance

      Right. They don't need to know about "emotional distance," because they live in a society where people from outside an immediate family group actually give a shit about each other. Strange concept, I know.

      >the need to be assertive or to tolerate >assertiveness in others,

      Yep. Again, because they have a consistent social structure, they don't need to learn how to communicate in an environment where the heirarchical position of individuals is constantly in flux, depending on context. Each individual has a consistent position in the social pecking order, which makes life much easier.

      >the "sixth sense" that most urban and even >suburban dwellers develop about crime and >dangerous situations

      Again, their society doesn't include things like illegal drug use (and hence, no drug-related crime.) They don't have expensive consumer electronics as an incentive for theft, and being agriculturally based means that virtually anyone is able to get a job, regardless of lack of skill...so there is little incentive to steal.

      The bottom line is that in a vast multitude of areas, mainstream contemporary (corporate) American society is sick, degenerate, and unjustifiable. It is also primarily based in nearly every aspect on the concept of weakening and impoverishing the individual almost to the point of death, so that there is no possible chance of said individual being a threat to the homocidal parasites at the top of the heap. Sure, there's a whole heap of *talk* about the importance of individuality...but the intention behind that is actually the weakening of social cohesion...which again, leads indirectly to the weakening of the individual.

      By contrast, most non-mainstream indigenous or technologically regressive societies are based on the concept of *strengthening* both individuals and communities, and as such they form methods of achieving this over time. So yeah...anyone coming from one of those societies will experience problems...they'll need to undergo a paradigm shift...From being in a society where the emphasis is on doing things that *do* work to benefit human beings, to being in one (the mainstream one) where the specific intention is to emphasise doing things which are detrimental to human beings.

    3. Re:Somewhat informed? by dvdeug · · Score: 4, Insightful

      From being in a society where the emphasis is on doing things that *do* work to benefit human beings, to being in one (the mainstream one) where the specific intention is to emphasise doing things which are detrimental to human beings.

      If our society is detrimental to human beings, why do they depend on us for medical care? They get their idyllic society at the cost of being dependent on our society. They don't have to fight, because we provide the military that protects them. And anyone too disruptive can be exiled to the real world. They need us to keep their world running.

    4. Re:Somewhat informed? by Anonymous Coward · · Score: 1, Insightful
      They don't have to fight, because we provide the military that protects them.

      The Amish and Mennonite communities don't need our military to protect them. A pacifist stance is central to their faith and if our military wasn't there, it wouldn't faze them. The Martyr's Mirror details just how strongly they clung to their pacifist views, even when they were in grave danger just for existing. It is a collection of stories from the 17th century about how the Anabaptist's remained peaceful even in the midst of terrible persecution.

      They need us to keep their world running.

      They have maintained this standard of living for a looong time. The only reason that they need our world is to "keep up" in our world. If we weren't there they wouldn't have to worry about skyrocketing land costs, obliteration of smaller farmers, and technology encroaching in every area of their lives.

    5. Re:Somewhat informed? by NoMoreNicksLeft · · Score: 4, Insightful

      Nice to think that, though.

      They don't depend on us for medical care, if we withdrew it, they'd go on much as they have before modern medicine was available. They pay for it too, or do you think the AMA sends out doctors to Amishland to treat people for free, because they're all a bunch of big freeloaders? That they choose not to go to medical school themselves means little, did you insist that one of your own family go? Or maybe you're pissed that they don't do any medical research (hey bonehead, this article says that they're participating, in case you didn't notice). Well, if our superior capitalist system is doing its job, the cost of that research is factored in to the care that they pay for.

      They don't have to fight, you say? I know, I know. Everyone is nervous that Iraq will invade, and the Amish, well, they'll be sitting ducks. Wouldn't suprise me if that asshole Saddam launches scuds at them filled with kurdish nerve gas.

      And what about this exile thing? You obviously don't have a clue, but it's going to be so hard to inform you against your will. They allow people to voluntarily leave. They don't force anyone. Those that are disruptive (which happens very rarely) are usually shunned as I understand it. As long as they're willing to put up with that, nothing more happens. They don't do it for 3 weeks, and if the behavior still hasn't ended, they don't form a lynch mob and storm their house at night.

      They don't need us.

    6. Re:Somewhat informed? by Kaboom13 · · Score: 2, Insightful

      Pacifist's are always parasitical. The world is not a happy fun place where if you don't piss anyone off they will leave you alone. The reality is if you have something someone else wants and no means to protect yourself they will come and take it. You really think if we somehow placated all the people we have pissed off over the years, abolished our military, and took up pacifism the world would leave us alone? How long would it be before countries that had lower standards of living and a military saw our wealth and wanted a piece of it. And because we are pacifists, any country that could get a hold of a boat and some guns could take anything they wanted. Current "pacifists" get by only because large, powerful countries like ourselves will protect them. All it takes to bring pacifism down is one group who realizes they can have anything they desire without any work by taking it with force. Noone considers invading us because they know we could crush them with superior m,ilitary might. If we lay down our arms, (and didn't have any militarily strong allies willing to protect us) how long till aggressive countries like China, North Korea, Cuba, etc. decided to take our wealth for their own? How long until the son's and daughters of the new pacifist america are drafted into the people's army at penalty of death? Pacifism is a pathetic excuse for a philosophy. What it boils down to is "we are better then to fight and die to protect our lives and belongings, let the unbelievers waste their lives protecting us". Pacifism can never work on a large scale without 100% participation (and even pacifist communities cant manage 0 violence among themselves).

  3. The Amish by petrus4 · · Score: 5, Insightful

    The Amish are an extremely important cultural group, IMHO. I'd be lost without my computer, but aside from that I consider them a positive example to the rest of us (at least in some respects) where sustainable living is concerned. I've believed for a while now that despite having had some people laugh at them, it may well be that the Amish themselves will have the last laugh once peak oil hits. Their lifestyle also has numerous sociological benefits as well. It's fairly self-evident that the level of communal interaction is higher among less technologically oriented societies, as well as overall levels of apathy being a good deal lower. People from such communities tend to care a great deal more about their fellow man, and on a day to day basis, as well...not just when disaster hits. The rest of human society could learn a lot from them.

    1. Re:The Amish by petrus4 · · Score: 2, Insightful

      They've kept knowledge of how to live independently of electricity within living human memory, for one thing. It is therefore possible to study their lifestyle and (in the event that for whatever reason, large-scale generation of electricity becomes impossible) learn how the rest of humanity might be able to cope with it.

      True, the picture of a low-technology lifestyle isn't *entirely* rosy...They have a much higher birthrate on average, and as the article points out, a much smaller population compared to the average means less genetic diversity, which in turn means more genetic problems, and *possibly* somewhat lower average intelligence. It would also possibly mean lower overall literacy...but there are a very large number of people within the general American population who do not have basic literacy and numeracy skills, either. It is entirely possible that the Amish actually have a rather superior education system, since the intention behind their system would actually be to educate...whereas the aim of the mainstream education system in most countries these days is likely a lot closer to penal reform.

    2. Re:The Amish by Eskarel · · Score: 4, Insightful
      I agree with some of this, but it's not really fair to base communal interaction on this sort of society because it's a very insular and homogenious society.

      Every member of the Amish community is very much like every other member, religiously, ethnically, even gentically(hence this article). Those who disagree with their way of life probably leave the society, there is little conflict, but there is little difference also.

    3. Re:The Amish by mochan_s · · Score: 2, Insightful

      Their lifestyle also has numerous sociological benefits as well. It's fairly self-evident that the level of communal interaction is higher among less technologically oriented societies, as well as overall levels of apathy being a good deal lower. People from such communities tend to care a great deal more about their fellow man, and on a day to day basis, as well...not just when disaster hits. The rest of human society could learn a lot from them.

      A professor mine used to say that if you used things like it's self-evident and obvious before a leap of logic, anything could be justified.

      I could say that it is obvious that no matter where you put humans they always live sociologically in a smiliar way. Put any animal society anywhere else they'll do the same things - same with humans. So, maybe your whole view is just grass is greener on the other side.

  4. Amish Paradise by Ranger · · Score: 2, Insightful

    illustrating why they are not just mindless kneejerk technophobes."

    As opposed to mindless kneejerk slashdot technophiles?

    Anyway time to get out Weird Al's Amish Paradise.

    --
    "You'll get nothing, and you'll like it!"
  5. Peak Oil by josh3736 · · Score: 4, Insightful
    I've believed for a while now that despite having had some people laugh at them, it may well be that the Amish themselves will have the last laugh once peak oil hits.
    I've read a lot (from both sides) about Peak Oil and I've come to the conclusion that while the end of oil is nigh, the end of the world and civilization is not. The thing that Peak theories fail to take into account is the fact that as the price of oil-derived energy rises, the attractiveness of alternate sources also rises. As more people switch to alternate fuel sources, there will be more incentive for companies to put resources into research and the economy of scale will take over after a while.

    So yeah, it's not a good time to buy a new car, but the gears of industry aren't exactly about to come to a screeching halt.

    Of course, depending on how rough the transition is, the Amish very well could have a lot to teach us.

  6. Re:Indians? by Dahan · · Score: 4, Insightful

    "Native Americans"? I'm a native American, seeing that I was born and raised in America. However, I'm not Indian.

  7. Re:Indians? by kf6auf · · Score: 2, Insightful

    I'm sorry you dislike it when people, usually citizens of the United States (notice I am being politically correct here too and not using the term Americans which one might argue includes Canadians, Mexicans, and Latin Americans), use the term "Indians" to refer to the people who were native to the land when Columbus arrived. I even agree with you that people should use the term "Native Americans" more often because it minimizes genuine confusion. If I had to speculate, the reason the term is still used is because that is what people are taught in Kindergarten and because it is much more fun to play games with Indians and Pilgrims than it is to play games with "Native Americans" and "Immigrants Predominantly Fleeing Religious Persecution in Europe" since they sure weren't actually on a pilgrimage anywhere. Sadly, this probably isn't going to change, but if you wanted to be productive you could make polite comments about the inherent confusion in using the term "Indians" to refer to Native Americans that would at worst be ignored rather than moderated -1, Offtopic but more likely at least encourage the use of the term "Native Americans" in /. submissions.

    That being said, and in hope that maybe this comment won't be moderated totally offtopic, I found both articles very interesting and I suggest that anyone who hasn't read them to do so. Research like this will help many people with rare genetic disorders and I sincerely hope it can continue for many years. Now go ahead and moderate me offtopic anyway.

  8. More on the Mennonites--to further complicate it by rynthetyn · · Score: 3, Insightful

    While some Mennonites drive cars, not all of them do, and not all of them are plain. When my aunt and uncle lived in Cape Coral, Florida, they went to a Mennonite church that you would have no idea was a Mennonite unless they told you it was. They all dressed like everybody else, the music was contemporary, it basically looked like the modern American megachurch. And, even with the plain Mennonites who shun cars and electricity, you can tell them apart from the Amish if you know what to look for, they drive different kinds of buggies, the women wear different prayer caps, and there are several other distinctions.

    And, to make things more complicated, you also have to factor in the various Brethren groups, which may be more or less plain (my grandmother grew up plain brethren, I think it was after she married my grandfather that she became lutheran, which is what my dad grew up). Then there was the United Brethren, which was the first American grown denomination and was started by a Mennonite preacher in my great-great-great-great-great uncle's barn in the 1767, and which much of my mom's side of the family belonged to(at least those who didn't marry Mennonites). The best I can gather, at some point in the late 1800s they split, some of them joined up with the Evangelical Brethren to become the Evangelical United Brethren, which later merged with the Methodists to create the United Methodists. And so, in a nutshell, much of American religious history can in some way tie itself back in history to the Amish by way of the Mennonites (which are of course an offshoot of the Amish).

    --
    Eagles may soar, but weasles don't get sucked into jet engines...
  9. Re:Inbred diseased folks... by Anonymous Coward · · Score: 1, Insightful

    The Amish have an incidence of autism that is less than 1/10th of the general population of the US.

    Do we really know this is genetic? Their environment is very different from outsiders'.

  10. Re:Indians? by protobion · · Score: 1, Insightful

    Hmm, I never thought of Whites and Indians having any issues, except with the displeasure with outsourcing.

    --
    Essentia non sunt multiplicanda praeter necessitatem.
  11. Re:Inbred diseased folks... by deaddrunk · · Score: 2, Insightful

    Any follower of the teachings of Jesus Christ is a Christian. That's what the word means and no amount of wordplay is gonna change that.

    --
    Does a Christian soccer team even need a goalkeeper?
  12. A Debian view on the Amish by g2devi · · Score: 4, Insightful

    > why do they depend on us for medical care?

    Think of it like a Debian user does.

    Debian has several repositories:
    * SID -- contains the latest and greatest, but it can be unstable and things may be
    * Testing -- contains those parts of SID that have been around a while don't seem to break anything
    * Stable -- contains those parts of Testing that have been around for a while and don't break things. Stable isn't updated that often, but receives constant security patches.

    Given this, let's describe how the Amish see it:
    * SID -- Geek enthusists who'll by anything new and shiny
    * Testing -- the rest of society who'll only use stuff that's actually useful
    * Stable -- Amish-like communities who'll only use generally available technology that is both useful and has a positive impact on their society.

    Now you might claim that the people who rely on Stable are in this privileged position because of all the people who use SID or Testing. You'd be right. But who cares? SID users are happy on the cutting edge, Testing users are happy with the less wild and wooly pace, Stable users are happy with the tried and true. Everyone wins.

  13. Possibly lower average intelligence? by Spirckle · · Score: 2, Insightful

    I would say it's probably average, at least in my experience. I went to an Amish Mennonite elementary and middle school and we took the state educational evaluation tests every year. EVERYBODY in my grade placed above state average, even the *dumb* ones.

    Amish and Mennonite intelligence is applied differently maybe. And in some sense even the ones that try to assimulate into the larger culture are always on the outside looking in. Its not a bad thing. It gives great perspective.

    --
    Using the best knowledge of today to create the problems of tomorrow.
  14. From personal experience, I disagree by Anonymous Coward · · Score: 1, Insightful

    >By contrast, most non-mainstream indigenous or technologically regressive societies are based on the concept of *strengthening* both individuals and communities,

    I hate to break it to you, but having grown up in a very conservative, evangelistical religion where contact with outsiders was very much frowned on, I cannot help but find your words utterly, completely naive, and myself in complete agreement with the parent poster. Sure, such a society benefits some people, those who are happy to fit in and play the part.

    However, in any society there are always those who don't fit in, the outcasts, such as the nerd, the artist, etc. Our "individualistic" society creates a place where these people can lead normal, productive lives. It protects the right of the minority (to a greater or lesser degree.) The right to make your own informed choices, to have something called an "imagination", to create art, to think critically about situations without others telling you what you are allowed to think (or not think), to learn about the universe and the world around you, the right to be curious and ask real questions and get real answers (instead of say, creationism).

    There is a basic human need to fit in. Naturally any community can fill this need. Cults fill this need. Crazy nationalistic groups can even fill this need. When you break free from such a group, you discover that the world is not clear-cut black and white, and there are no easy answers to life's problems. And suddenly the community sees you as evil.

    You see, the "communtity" is an illusion. They were never really your friends to begin with, their friendship was _conditional_ on your going along with their beliefs.

    There is this trend nowadays to think that the low-technology of the past was some kind of panacea, forgetting that a couple centuries ago, before modern technology, how many women died at childbirt, how the average life-expectancy was half of what it is now. Truly naive. Without the dissenters, the individuals, without the scientists who broke from the strong religious communities of the past, we would still be dying from TB and the plague, and marvelling at the heavenly sphere that revolves around the earth, and fearing hellfire.

    Yes, it is not easy to live in this society. But would I ever go back to where I was before? Hell no.