Birth defects – should taxpayers subsidize consequences of FLDS practice of first-cousin marriages?

[nerdgirl 0]

The central questions underlying this both of ethical & pragmatic nature; I'm not sure they can be disentangled.

Should taxpayers subsidize medical care for children affected by severe birth defects because of the FLDS’ practice of first-cousin marriages?

Or should children be denied medical care because of their parents’ “choices”?


Here’s another reason to be critical of Warren Jeffs and the FLDS, especially if you are an Arizona taxpayer.


The FLDS community of Colorado City (nee Short Creek) and the adjacent community across the Utah border has the *world’s highest incidence* of a genetic birth defect causing severe mental retardation, severe epileptic seizures, inability to walk or even sit upright, severe speech impediments, failure to grow at a normal rate, physical deformities, and/or death called fumarase deficiency. Before identification in the FLDS community there had fewer than 100 incidences reported worldwide. It’s caused by a recessive gene, but when two very closely related individuals both carry the gene, their child is more likely to have the condition.

Here’s the part for Arizona taxpayers:

From 29 Dec 2005 issue of the Phoenix AZ New Times: “Forbidden Fruit: Inbreeding among polygamists along the Arizona-Utah border is producing a caste of severely retarded and deformed children.” The incidence has been reported other places, but this seems to be the starting expose.

“The state not only ignored the crimes for decades, it helped facilitate them by allowing the FLDS polygamists to set up a town government, a public school district and a police department that have received tens of millions of dollars in taxpayer funds despite the fact that polygamy violates Arizona’s Constitution. The FLDS has had an iron grip on the local governments, because it has been impossible to get elected or hired to a taxpayer-funded post without the church’s blessing.

“The fundamentalist community has also benefited immensely from state health-care services for the poor and indigent by receiving more than $12 million a year in state assistance in Arizona to pay for health-insurance premiums.

“It turns out that taxpayers also have been footing the bill for the fumarase deficiency children born to polygamists who insist that plural marriage involving close relatives is their divine right.”

“‘They think it is a test from God,’ says Wyler, who was born and raised in the FLDS before he was booted out” [who’s paying for the consequences of their decisions? - nerdgirl] ‘People don't like to talk about their fumarase babies for obvious reasons,’ Wyler says. ‘I don’t know how many who die within the first two or three years that we don’t even ever know about.’

“In fact, the state’s willingness to provide medical assistance to afflicted children may be allowing Utah families to receive treatment paid for by Arizona taxpayers. ‘I don’t know if all the patients I treat are technically eligible for my services [because they may live out of state],’ [Dr.] Tarby says [the pediatric neurologist who initially identified fumarase deficiency in the FLDS community - nerdgirl].”

This is direct causation and genetic forensic evidence of intermarriage of first cousins, which is illegal in Arizona.

“An MRI of the brain of one fumarase deficiency child showed that more than half the brain was missing.

“Tarby says most of the children ‘can say at least a word or two,’ but that all of them ‘have severe mental retardation’ with IQs of less than 25.”

Legally, can an individual with an IQ of <25 enter into contracts? Ethically?

[Only pseudo-sarcastic: Does anyone else remember the dark ‘comedy’ from a couple years back, Idiocracy – does the world need to wait 500 years?]

“‘Polygamy leads to sexual predation, and that leads to genetic problems,’ says Rehabilitative Services’ Tarby. ‘If you stop the sexual predation, you stop the genetic problem as well. But [FLDS members] don’t think of it as sexual predation. That’s the big problem.’

“In this isolated religious society, few secrets have been more closely guarded than the presence of fumarase deficiency. Fundamentalist Church of Jesus Christ of Latter-day Saints elders, who control the community, have labored to keep the public from finding out why the disorder is manifesting. Many members of the fundamentalist community don’t even know it’s occurring.”

Where else are high incidence of congenital (non-environmental) birth defects observed?

- Taliban-controlled & influenced Afghanistan, more

- Saudi Arabia, where “The population is characterized by a high consanguinity (25–70%) and a high percentage of first-cousin marriages.” ’nother reference, & one more.

- Northern Nigeria, i.e., that part under Sharia law. ‘nother one.


----- ----- -----

For me, this is a tough ethical case.
(For those opposed to socialized medicine, universal healthcare, or subsidized insurance for minors, it should be less conflicted.)

Should children be denied medical care because of their parents’ choices, however constrained or forced they might be? Because of their parents’ illegal activities? Should there be some exemption for religious-based choices? Is subsidizing long-term medical care tacit endorsement of the group’s practices? Or is it an exogenous factor supporting it? (I.e., remove the tay-payer funded subsidies ($) - if they have to pay for the consequences of their choices will their behavior change?) Are the FLDS somehow more or less deserving of public assistance than an inner-city crack-addicted prostitute?

First cousin marriages are permitted in Arizona only if the couple can prove they can no longer bear children, e.g., over 65.
First cousin marriages are prohibited in Texas.
Altho’ a minor, almost trivial, offense in comparison to child abuse or molestation, it’s also illegal.

Is this fundamentally different than those parents who allow a child to die from a treatable condition? These FLDS parents know (now) that the behavior they pursue – having children with closely related relatives – is leading to severe birth defects that kill or severely limited the quality of life of their children.

The ethical questions are provocative from two thousand + miles away.
At the same time, I don’t want to forget that these aren’t just notional or hypothetical ethics cases, but these are human beings and Americans.

VR/Marg

Act as if everything you do matters, while laughing at yourself for thinking anything you do matters.
Tibetan Buddhist saying

[Shotgun 1]

Sorry, this has nothing to do with the point of your thread, but...

Quote

"Polygamy leads to sexual predation . . ."

This sort of bugs me. I seriously doubt that polygamy has anything to do with sexual predation.

[nerdgirl 0]

Quote

Sorry, this has nothing to do with the point of your thread, but...

Quote

"Polygamy leads to sexual predation . . ."

This sort of bugs me. I seriously doubt that polygamy has anything to do with sexual predation.

Perhaps considering the quote from the article in terms of polygamy in which girls as young as 12 & 13 (allegedly) are married to 50-year olds is a less problematic? Or maybe not?

Contextually, the situation that Ted Tarby is describing in his quote is very different from the normative issues of 3 or more consenting adults chosing to pursue a polyamorous type of relationship. (Since whether one agrees with the law or not, polygamy is illegal.)

VR/Marg

Act as if everything you do matters, while laughing at yourself for thinking anything you do matters.
Tibetan Buddhist saying

[Shotgun 1]

I think that in any place where polygamy is illegal, these people are not legally married, and therefore not technically polygamists anyway.

And I think that if polygamy was legal and practiced throughout the U.S. by those who choose to, it would be obvious that it has nothing to do with sexual predation. A lot of the consenting adults who choose polyamorous-type relationships would probably choose plural marriages as well if they were legal, and I doubt that we would see a correlation with sexual predation in those cases.

So, unfortunately, the "polygamists" we hear of (in the U.S.) are typically of the type in this FLDS case, where it is also (allegedly) normal for older men to "marry" underage girls, so it apears as if the two (polygamy and marrying underage girls) are somehow related, when in reality I don't think they are.

[Shotgun 1]

And to answer your OP, I don't know.

When it says this:

Quote

The fundamentalist community has also benefited immensely from state health-care services for the poor and indigent . . .

That makes me think that they are getting the same treatment that anyone else who qualifies as "poor" or "indigent" in the state and that they are not being given special treatment.(???) So I guess these children have just as much right to medical care as any other children who have medical problems due to their parents' poor choices.

[kelpdiver 2]

Quote

That makes me think that they are getting the same treatment that anyone else who qualifies as "poor" or "indigent" in the state and that they are not being given special treatment.(???) So I guess these children have just as much right to medical care as any other children who have medical problems due to their parents' poor choices.

Not poor choices, but illegal choices. The ban on marriage for first cousins is because it leads to exactly this result. She mentioned the other similar circumstance - crack whore babies - however in this case the community repeatedly makes the same mistakes knowing the possible outcome, a far more informed decision than a drug addict.

There are no great answers to the problem:
1) status quo - blow lots of money
2) take the children away - now they no longer have to even hide this problem from their community
3) defund - now you hurting the innocent children
4) sterilize the community - now you're getting somewhere, but human rights rear their head.

[Shotgun 1]

Quote

She mentioned the other similar circumstance - crack whore babies - however in this case the community repeatedly makes the same mistakes knowing the possible outcome, a far more informed decision than a drug addict.

I don't know if I would call it a "far more informed decision than a drug addict." I think that most people are aware that drug abuse during pregnancy can cause medical problems for the baby.

[kallend 2,150]

If God told them to do it, who are we mere mortals to interfere?

...

The only sure way to survive a canopy collision is not to have one.

[Andrewwhyte 1]

Quote

For me, this is a tough ethical case.

Not for me

Quote

Should children victims of crime be denied medical care because of their parents’ perpetrators' choices,..?

[DrewEckhardt 0]

Should tax payers subsidize health care for Jewish-Americans with Tay-Sachs, African-Americans with sickle cell anemia, or Northern-European-Americans with Dupuytren's Contracture?

Those are all avoidable by not breeding with your kind of people. A nice uniform shade of brown would do wonders for eliminating genetic disorders especially those passed on with recessive genes.

Should tax payers subsidize large families? $12M barely covers the cost to educate the school aged children from 200 large families.

That problem would be easily avoided by using a little birth control or abstaining. Maybe we could mandate it, birth control after the first two, sterilization after the third.

Heck, $12M barely covers the costs to educate 1000 normal sized families' school-aged children. Throw in the income tax losses from one partner staying home with the children and it's more substantial.

Maybe we could just freeze the eggs and sperm, sterilize everyone, and only implant people who pay for a birth license (in cash or as a lien against real property) sufficient to compensate all the governments for the cost of raising, housing, and insuring their children until they become self sufficient (this is approaching 30) along with the loss in tax revenues.

6000 * 13 years of K-12 education or $78,000 would just be the start. I doubt $100K would do the trick.

We could just concede that religious and reproductive freedom have their costs. Or go after the parents who committed crimes resulting in damages to their children and the tax payers.

OTOH, punishing the children for their parents religious choices and secular crimes does have a nice Old Testament, original sin sort of feel to it.

[kelpdiver 2]

Quote

I don't know if I would call it a "far more informed decision than a drug addict." I think that most people are aware that drug abuse during pregnancy can cause medical problems for the baby.

addicts have diminished capacity, and I'm fairly confident that crack is more addictive than sex.

Also, it's harder to punish a crack whore - no money to collect.

[Shotgun 1]

Quote

addicts have diminished capacity . . .

I tend to disagree. But either way, the children have no more say in whether their parents use drugs or commit incest, so I think they should be treated the same in either situation.

[lawrocket 3]

I don't see why not? We subsidize Fetal Alcohol Syndrome Fred and Crack baby Ed. Why not Inbred Jed?

My wife is hotter than your wife.

[CanuckInUSA 0]

Quote

Why not Inbred Jed?

Said with Dueling Banjos being played in the background.

Okay I know the movie "Deliverance" isn't an FLDS story, but I can't help but think about it when the topic of 1st cousins breeding with each other comes up.

Squeal like a pig!!!

Try not to worry about the things you have no control over

[lawrocket 3]

Wow, folks. We dont' got us a boar we got us a sow!

My wife is hotter than your wife.

[cloudseeker2001 0]

Quote

The central questions underlying this both of ethical & pragmatic nature; I'm not sure they can be disentangled.

Should taxpayers subsidize medical care for children affected by severe birth defects because of the FLDS’ practice of first-cousin marriages?

Or should children be denied medical care because of their parents’ “choices”?


Here’s another reason to be critical of Warren Jeffs and the FLDS, especially if you are an Arizona taxpayer.


The FLDS community of Colorado City (nee Short Creek) and the adjacent community across the Utah border has the *world’s highest incidence* of a genetic birth defect causing severe mental retardation, severe epileptic seizures, inability to walk or even sit upright, severe speech impediments, failure to grow at a normal rate, physical deformities, and/or death called fumarase deficiency. Before identification in the FLDS community there had fewer than 100 incidences reported worldwide. It’s caused by a recessive gene, but when two very closely related individuals both carry the gene, their child is more likely to have the condition.

Here’s the part for Arizona taxpayers:

From 29 Dec 2005 issue of the Phoenix AZ New Times: “Forbidden Fruit: Inbreeding among polygamists along the Arizona-Utah border is producing a caste of severely retarded and deformed children.” The incidence has been reported other places, but this seems to be the starting expose.

“The state not only ignored the crimes for decades, it helped facilitate them by allowing the FLDS polygamists to set up a town government, a public school district and a police department that have received tens of millions of dollars in taxpayer funds despite the fact that polygamy violates Arizona’s Constitution. The FLDS has had an iron grip on the local governments, because it has been impossible to get elected or hired to a taxpayer-funded post without the church’s blessing.

“The fundamentalist community has also benefited immensely from state health-care services for the poor and indigent by receiving more than $12 million a year in state assistance in Arizona to pay for health-insurance premiums.

“It turns out that taxpayers also have been footing the bill for the fumarase deficiency children born to polygamists who insist that plural marriage involving close relatives is their divine right.”

“‘They think it is a test from God,’ says Wyler, who was born and raised in the FLDS before he was booted out” [who’s paying for the consequences of their decisions? - nerdgirl] ‘People don't like to talk about their fumarase babies for obvious reasons,’ Wyler says. ‘I don’t know how many who die within the first two or three years that we don’t even ever know about.’

“In fact, the state’s willingness to provide medical assistance to afflicted children may be allowing Utah families to receive treatment paid for by Arizona taxpayers. ‘I don’t know if all the patients I treat are technically eligible for my services [because they may live out of state],’ [Dr.] Tarby says [the pediatric neurologist who initially identified fumarase deficiency in the FLDS community - nerdgirl].”

This is direct causation and genetic forensic evidence of intermarriage of first cousins, which is illegal in Arizona.

“An MRI of the brain of one fumarase deficiency child showed that more than half the brain was missing.

“Tarby says most of the children ‘can say at least a word or two,’ but that all of them ‘have severe mental retardation’ with IQs of less than 25.”

Legally, can an individual with an IQ of
[Only pseudo-sarcastic: Does anyone else remember the dark ‘comedy’ from a couple years back, Idiocracy – does the world need to wait 500 years?]

“‘Polygamy leads to sexual predation, and that leads to genetic problems,’ says Rehabilitative Services’ Tarby. ‘If you stop the sexual predation, you stop the genetic problem as well. But [FLDS members] don’t think of it as sexual predation. That’s the big problem.’

“In this isolated religious society, few secrets have been more closely guarded than the presence of fumarase deficiency. Fundamentalist Church of Jesus Christ of Latter-day Saints elders, who control the community, have labored to keep the public from finding out why the disorder is manifesting. Many members of the fundamentalist community don’t even know it’s occurring.”

Where else are high incidence of congenital (non-environmental) birth defects observed?

- Taliban-controlled & influenced Afghanistan, more

- Saudi Arabia, where “The population is characterized by a high consanguinity (25–70%) and a high percentage of first-cousin marriages.” ’nother reference, & one more.

- Northern Nigeria, i.e., that part under Sharia law. ‘nother one.


----- ----- -----

For me, this is a tough ethical case.
(For those opposed to socialized medicine, universal healthcare, or subsidized insurance for minors, it should be less conflicted.)

Should children be denied medical care because of their parents’ choices, however constrained or forced they might be? Because of their parents’ illegal activities? Should there be some exemption for religious-based choices? Is subsidizing long-term medical care tacit endorsement of the group’s practices? Or is it an exogenous factor supporting it? (I.e., remove the tay-payer funded subsidies ($) - if they have to pay for the consequences of their choices will their behavior change?) Are the FLDS somehow more or less deserving of public assistance than an inner-city crack-addicted prostitute?

First cousin marriages are permitted in Arizona only if the couple can prove they can no longer bear children, e.g., over 65.
First cousin marriages are prohibited in Texas.
Altho’ a minor, almost trivial, offense in comparison to child abuse or molestation, it’s also illegal.

Is this fundamentally different than those parents who allow a child to die from a treatable condition? These FLDS parents know (now) that the behavior they pursue – having children with closely related relatives – is leading to severe birth defects that kill or severely limited the quality of life of their children.

The ethical questions are provocative from two thousand + miles away.
At the same time, I don’t want to forget that these aren’t just notional or hypothetical ethics cases, but these are human beings and Americans.

VR/Marg

Yes we should without a doubt!

Those children have read American blood in their viens and have the same God given and constitution guaranteed rights as any other born/not born in this country.

"Some call it heavenly in it's brilliance,
others mean and rueful of the western dream"

[thirdworld19 0]

Looks like I may be the minority, but I don't think the taxpayers should subsidize ANYONE's healthcare - retarded or not. I think the government interferes with peoples lives far too much as it is. I don't need someone else living for me. We need to decrease the amount of government interference, not increase it.

[SivaGanesha 2]

Interestingly all members of the British Royal Family are descendants of a first cousin marriage. Queen Victoria and her husband Prince Albert were first cousins.

"It's hard to have fun at 4-way unless your whole team gets down to the ground safely to do it again!"--Northern California Skydiving League re USPA Safety Day, March 8, 2014

[nerdgirl 0]

Quote

Interestingly all members of the British Royal Family are descendants of a first cousin marriage. Queen Victoria and her husband Prince Albert were first cousins.

Yes, and that marked the beginning of hemophilia into the British royal line. It killed one of Queen Victoria's sons.

The Hapsburg 'lip' was another example of a congenital defect due to intermarriage in European royal families.

Differences include
(1) It was not illegal at the time.
(2) By luck or whatever, those are either non-life threatening or are treatable/controllable diseases, unlike fumarase deficiency.
(3) The royal families generally did bring in new gene pools in prior or successive generatons, again unlike the FLDS.

VR/Marg

Act as if everything you do matters, while laughing at yourself for thinking anything you do matters.
Tibetan Buddhist saying

[nerdgirl 0]

Quote

Yes we should without a doubt!

Those children have read American blood in their viens and have the same God given and constitution guaranteed rights as any other born/not born in this country.

Just want to make sure that I'm understanding correctly, neither agreeing nor disagreeing at this point:

You are claiming that socialized medicine is a "God given and constitutionally guaranteed right" ?

Therefore you're in favor of USG subsidized universal healthcare for all Americans?

VR/Marg

Act as if everything you do matters, while laughing at yourself for thinking anything you do matters.
Tibetan Buddhist saying

[nerdgirl 0]

Quote

Looks like I may be the minority, but I don't think the taxpayers should subsidize ANYONE's healthcare - retarded or not. I think the government interferes with peoples lives far too much as it is. I don't need someone else living for me. We need to decrease the amount of government interference, not increase it.

W/r/t folks who've responded to this thread so far, perhaps yes. In general, no, you're not. It's a lively mix.

In just the last year, there have been many discussions on the board in which some folks have opposed SCHIP (and this one & this one), vehement opposition to increased govt involvement in healthcare, criticism of the current system, and some have argued strongly for privatization of all healthcare. We've had engaging, detailed discussions on interpretation of the Constitution as it relates to "general welfare" including healthcare (& another), (& that's not just becuase I participate in them, altho' that does help me remember them. --[at myself]).

If you are opposed on any (reasonable) grounds to socialized medicine or universal healthcare than it's really not an ethical conundrum; for those who either support it whole-heartedly or to some limited extent, than it may be. For some it doesn't matter & children should not be punished for the behavior (illegal, immoral, stupid, or otherwise) of their parents and assert that society benefits in the long run from healthy, educated, & non-sexually abused, molested, or neglected children regardless.

VR/Marg

Act as if everything you do matters, while laughing at yourself for thinking anything you do matters.
Tibetan Buddhist saying

[nerdgirl 0]

Quote

Should children victims of crime be denied medical care because of their parents’ perpetrators' choices,..?

[Andrewwhyte 1]

Quote

Quote

Should children victims of crime be denied medical care because of their parents’ perpetrators' choices,..?

Excellent point.

Should the perpetrators' behavior (illegal, immoral, stupid, or whatever) be tacitly encouraged/supported through such policies?
Or does the state's interest in protection of the victims in this case supersede that of the state's interest in enforcing legal statutes? Or supersede the state's interest in punishing illegal behavior?

[idrankwhat 0]

I'm probably being too simplistic but why not have these folks pick up the tab?

[rehmwa 2]

Quote

I'm probably being too simplistic but why not have these folks pick up the tab?

That's a bit closer. One step further, and we can agree the 'parents' should be responsible for their kids.

what an odd concept

...
Driving is a one dimensional activity - a monkey can do it - being proud of your driving abilities is like being proud of being able to put on pants