First-cousin marriage and Old Order health issues

Kevin at the Amish Cook blog has already posted on this issue but I found it so compelling I wanted to pass it along.

This Wall Street Journal article examines the situation of a Pennsylvania Old Order Mennonite father of 11 children, 9 of whom suffer from rare, genetically-inherited medical ailments.

The father, who in keeping with Old Order belief is uninsured, has paid around $400,000 in medical bills in recent years, and is in debt for a further $287,000.

One of the captions attached to a photo in the accompanying slideshow mentions that the father in question, Jesse Martin, married his first cousin.

Old Order Mennonite

photo:  Gianni Cipriano, WSJ

Among Old Order communities, first cousin marriages are generally taboo, though unions between more distant relatives occur fairly frequently.

The question that immediately popped into my mind is, does Martin’s argument become weaker due to the fact that he knowingly (one assumes) married a first cousin?  Would hospitals be able to employ such a justification for denying discounted rates?

And was Martin even aware of the supposed increased risk of genetic ailments in such a partnership?  Should the question of such foreknowledge come into play?

This is a sticky issue and putting it in those terms may seem a bit heartless–reading through the story you feel for the kids, the parents, and I had to admit there is a certain logic to their argument–they claim that the ‘sticker price’ being charged for their medical care represents a vastly inflated sum, a practice medical institutions follow “in order to pay for updates to technology and services”, and one must assume, at least to some degree to make up for lower rates paid through insurance providers.  Martin would like to pay rates more representative of the actual costs of care provided.

At the same time, outsiders rightly or wrongly complain that Old Orders receive special treatment at the hands of government, often acquired using the fundamental argument of religious belief and the implicit cultural practices tied to such beliefs.  The hospital here argues that Martin, as owner of one farm and allegedly a co-owner of a second, each of which are valued in the millions of dollars, has the financial wherewithal to pay his debts.

Old order mennonite jesse martin

photo:  Gianni Cipriano, WSJ

Martin responds by saying that “they don’t understand our ways…If we sell the farm, sure, we can give them the money, but what do we do then?”

The article explains that numerous hospitals who serve Old Order groups have offered significantly reduced fees, and some have even provided certain major services at no cost.  Martin, whose children have been treated at a few local medical institutions, has negotiated discounts of up to 50% at one of the hospitals in question.

Lot of issues going on here.  But the one I have not seen discussed yet is if the Old Orders in question were to receive discounted rates based on a cultural/religious belief argument (and whoever else were to successfully employ such an argument for that matter), should the hospitals be able to take into account the blood relations of the partners, and the supposedly higher risks implied by marriages between close relatives?  First-cousin marriages are technically illegal in over two dozen states, including Ohio and Pennsylvania.

Marriage is ostensibly a free choice, and even within a closed community, there are options to whom you can marry.  Marriage between more distant relatives generally means a lower risk of genetic diseases manifesting themselves in children (though perhaps not as low as one would think, according to this study).  On the other hand, the WSJ article also points out that while certain diseases may show up more frequently in first-cousin marriages, others may actually be less likely.

Interestingly, it’s not an issue confined to the Old Orders–one recent BBC  article claims that over half of British Pakistanis are married to first cousins, apparently a quite common practice in the culture.  The article states that British Pakistanis are 13 times more likely to have genetic disorders than the general population–slightly more than 3% of all births but accounting for nearly a third of afflicted children.

See also: Do Amish have genetic disorders?

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    23 Comments

    1. Reid Hochstedler

      The issue isn’t really a single couple of first cousins marrying. The issue is repeated generations of cousins marrying. A first cousin couple who marries, and are no closer than first cousins, have the same risk of having a child with a genetic illness as a woman giving birth after the age of 40.

      As someone of Amish descent I can trace my heritage back many ways to the same ancestors, as I am sure many of this sites readers can too. My grandparents, great-grandparents, and great-great-grandparents were all related to one another and although I have not seen any ill effects in my family that does not mean it’s not an issue for Old Order communities at large.

      I believe the Martins should be able to negotiate prices, it is their right as consumers. Insurance companies routinely negotiate prices.

    2. I have a lot of questions about the article. The first thing that stood out was the claim in the article that Martin’s hands were dirty from planting corn. I’ve planted a fair amount of corn; my hands have never gotten dirty. Even the Old Orders don’t plant corn by hand; so why would his hands be dirty from planting corn? Then, the picture shows his hands and they aren’t dirty. Secondly, I’m not personally familiar with Old Order Mennonites, but Old Order Amish don’t approve of marrying first cousins. I doubt very much that he married his first cousin. Thirdly, the Old Order Amish community that I’m familiar with has worked out a deal with the hospitals to get the same discounts they give to HMOs in exchange for payment within 30 days. The community raises the money to make the payment. I can’t believe that the Old Orders in Pennsylvania haven’t worked out similar discounted deals with the hospitals there and that the community isn’t helping with Martin’s bills. I think we need the rest of the story because the one the Wall Street Journal reported doesn’t smell right.

    3. This can be a very sticky issue! Anyone who is uninsured should be able to negotiate a lower fee. I remember when I was uninsured, the hospital I dealt always knocked 30% off the doctor’s office visit for paying that day. They also are good at reducing other charges and working with you on payments insured or not.

    4. I just read in The Vender (Amish advertising paper in Holmes Co. area) a little statistic that surprised me. It said 20% of all marriages in the world were between first cousins. Where the info originated from, I dont know.
      This tidbit was not given to support or oppose first-cousin marriages, was just a trivia thing.

    5. Marc

      Wait, the man has property worth in the millions, and he isn’t paying his hospital bills because doing so would mean abandoning his way of life? I’m sorry, but no. The hospital is in the business of providing health care. It’s not in the business of preserving the Old Mennonite (or any) lifestyle or religion.

      As for cousin marriage, here’s some info including a partial global map of prevelance rates:

      http://www.consang.net/index.php/Summary

    6. Dave Carrig

      Old order Amish/Mennonite or not I personally don’t believe it is ethical or right for hospitals to be in the business of negotiating health care!

      I have never understood this – my wife was hospitalized for three weeks for a nuerological condition and the initial bill was in excess of $300,000. My insurance company only paid $30,000.00 because that was the agreed upon price. So because I have pretty good insurance the bill came to $30,000.00 – yet the uninsured sap with the same condition who doesn’t know any better gets shafted for $300,000.00.

      Another classic example of why something needs to be done about health care in this country. Health care is a racket and quite frankly I think used car salesmen have more honor and integrity than most hospital administraters. At least they aren’t playing with a human life…

    7. Matt from CT

      Welcome to the games played with health care finance in the U.S.

      It has nothing to do with plain people, or marrying cousins.

      Back in the early 1990s my volunteer fire company intiated an ambulance service, financed by billing the patients. It provided a higher level of service to our patients for less cost to the taxpayers.

      At the time Medicare demanded they get xx% discount from the price. So we had to set a fee high enough that we could still break-even with the lower reimbursement percentage from Medicare. Medicare also required that we pursue collections vigorously on those who didn’t pay — they would consider it fraud if we didn’t try and collect the full charge from non-medicare patients we charged full price to (in Medicare’s eyes, failing to pursue collections would be a de facto price decrease…and they only paid xx% of our lowest price).

      Since that time it has changed to a reimbursement rate system set by Medicare, not entirely based on what we would charge a cash customer.

      Because our service was and is relatively small, we were never pressured by private insurance companies to make similiar deals. However larger ambulance firms do — I’m sure it’s along the lines of “Gee, give us xx% off the cash price and we’ll make sure you get a check in 30 days…otherwise, you know these darn computers, could take months to get the bills paid.”

      This perverse system of major government and private entities wanting discounts off the cash price for services is total baloney.

      One big reform for healthcare that would help, instead of dickering around with financing schemes, is to require the lowest price available to any entity be available to people who pay net 30.

    8. anonymous

      This man is not and should not be entitled to anything due to his religous beliefs.

      His children are sick due to his and his cousin deciding to go ahead and KEEP reproducing after his first born had major health problems for crying out loud! Selfish much? As a parent, why would you even take that chance again?

      He states that he beleives that the community should come together and care for eachother,yet he made the choice to leave that community and bring them to medical facilities to treat them. Which they did, and should receive payment in full. Nobody forced him to go, he chose to get treatment, which he knows isn’t free.

      Hospitals don’t get to negotiate the prices of the equipment and medications to care for people, why should he get to negotiate a price for saving his children’s lives? Maybe he should be thankful they’re still even around because the big bad hospitals helped them.

      The man is a walking oxymoron.

    9. Dave Carrig

      Hospitals don’t get to negotiate prices for equipment and medicine? Wake up and re-check your facts, anonymous! Because they certainly do.

    10. Helen Parnell-Berry

      Sorry but the whole issue has left me totally gobsmacked. As you know, here in the UK health care is free at the point of delivery. I am a health care professional and it is unethical for me to tell someone that they can’t marry their first cousin or if they do they can’t go on to have children just in case they may have a child with a congenital defect. This is regardless of colour, creed or bank balance/property equity. I understand that the poor chap can’t sell his farm; how would he support himself. And he can’t come and live here in the UK and get free health care, not unless he uprooted the whole family and jumped on a plane and set up the very first Old Order Mennonite community in the British Isles. Actually, that would be rather good.
      Sorry, I was waffling there. I just think that the concept of the richest nation in the world not being able to offer free health care is obscene. I await the fall out from that statement.

    11. Rachel M

      Oh trust me, Crockhead, he did marry his first cousin. I live in Lancaster County, grew up Amish and married a man who grew up old order Mennonite. When I read the article I suspected right away that this guy was “35er.” They are a very small sect that frequently marries first cousins. The reason for this is their church has split so many times. They are splintered to the point that a “church might consist of only relatives. This also explains why the church community would not be able to help pay the bills. Very likely there isn’t much to his community other than family, and as the article states, they already have helped out. Another reason I believe he is of the 35er sect is because the article mentioned them not having electricity. The only groups that dress like the photos show are 35ers and Groffdale Conference. Groffdale Conference Mennonites have electricity and do not marry first cousins.
      The 35er group is generally looked down upon by other Mennonites. They are the Schwartzentrubers of the Mennonites, so to speak.

      1. Grace Related to the Hoover's

        Related to the 35er's

        I too know that the 35er’s married 1st cousin, Which I know a family that had many problems with there children, even death with so server handy capped. I think it should be a law that 1st cousin should not get married as even in generation it will afect. Which my relatives wood agree.and left the 35ers Which did splinder many times.

    12. I agree with the comments that it is sad that our rich nation has such a poor health care system. I stand corrected about the likelihood that Martin married his first cousin. Every Amish community, while seemingly alike to outsiders, has its own pecularities and the old orders which whom I am acquainted do not marry their first cousins. I still cannot muster up much sympathy for Mr. Martin, however, for the medical bills he owes. We have the system we have. Why should me be any more immune from having to use some of his millions of assets to pay his medical bills than a non-Amish person? Everyone’s lifestyle is impacted when they have to pay huge medical bills.

    13. King

      I think the comment from Marc is pretty ignorant. The question is not about asking the hospital to preserve his way of life. His point is, if he were to sell his farm and use the money to pay a bill, what means would he have to pay his bills.

      That would be like Marc selling off his education

    14. Susan

      Having a medical background, I ran into some articles recently that state that there is actually no documented problems with first cousins marrying, contrary to popular myth. The genetic disorders inherent in some Amish families have nothing to do with how closely they are related directly, but rather in the fact that they are both from long lines of Amish, who are more likely to each be carrying the defective chromosome.

    15. Susan that is an interesting take and makes sense. I have no medical background :), but is this another way of describing the founder effect?

    16. Lloyd Hoover

      On Jesse and Esther

      Just a note… Jesse Martin is my uncle, and he did marry his double first cousin. Their kids are my double double first cousins. My parents are first cousins and our family has no medical disorders.

    17. Grace Related to the Hoover's

      I did find out that Jesse’s mother is a Hoover and related to me, I think it is so sad that Jesse and wife knew that the parents are 1st cousin and still got married NOW THE CHILDREN GET MARRIED AND ALL KINDS Of ISSUE WITH THERE CHILDREN, why keep the cycle going????????? Lloyd Hoover you didn’t mention that your cousins have problems and now there children. Sooo Sad !

      1. Lloyd Hoover

        Related to Jesse

        It is sad. I am so thankful that I left the 35ers and married someone totally unrelated to me. My sister is now dating one of Jesse’s sons. Their children would then be double double double cousins. So sad.

    18. Grace Related to the Hoover's

      I know the question is should Jesse and Esther pay there hosp. bills, Yes I think they should, even 100. mo. and etc. 9 out 11 is a lot , why, why on earth would you just keep going?? This subject is very sore with me about marring any cousins. SEEN TO MUCH! had to vent. Now its carried to Ky. too

      1. Lloyd Hoover

        Jesse is my uncle

        Grace, how closely related are you to Jesse Martin?

    19. Valerie

      Marrying First Cousins-

      I’m trying to remember which book (Deuteronomy?)in the Old Testament gives the list of the relations that CANNOT marry, but one thing I know by it, first cousins were not in the “no no” list. I found out when a new neighbor who became my friend (years ago) told me because I commented on the fact her & her husband looked so much alike.
      “That’s because we’re counsins” she said-their pastor looked in the Bible to make sure he was allowed to marry them scripturally and he was. So-they married and had 2 beautiful healthy children.

      That’s the only thing I can add, really, that it was not forbidden in the scriptures in the long list of forbidden marriages.

    20. Sadie

      First Cousins & Marriage

      I am sorry I can’t cite any sources as this information came to me via word-of-mouth, but what I had heard around five years ago or so was that it had been scientifically proven that — as long as no genetic conditions or such were possessed by either of the two individuals — a first cousin marrying a first cousin would not, alone, cause any genetic issues. The problem would be if either individual ( or both ) carried a mutated, damaged, or otherwise malfunctioning gene, then the children of the couple would be more likely to inherit it. Yet, that is true too of even two totally unrelated individuals — if each carries “x,” the children would also be more likely to inherit it. At least, that was what I heard and my understanding, which always could be wrong, especially at 8 am on the morning after a night of insomnia and no sleep!