I’ve heard of Hirschsprung’s Disease as an academically interesting instance of a developmental failure of nerve migration, but you really must read about the human cost of the disease — innocent little babies (and their parents) should never have to suffer this much. Chris Chatham is spreading the word about an expensive nutritional product, Omegaven, that has the potential to alleviate one symptom — liver failure due to the need for sustained IV feeding — and the idea is to encourage clinical testing so the treatment can be more widely used and supported by insurance companies. Let’s raise the profile of this work and try to get some media attention; reducing the need for infant liver transplants sounds like a worthy cause.
Ah, PZ, you seem to be a product of a religious/deterministic culture like the rest of us. At the risk of seeming calloused, why should babies in an unregulated universe be exempt from pain and suffering? Doubtless your view is a biological urge to protect our young, but perhaps you’ve also become infected by the religious precept that the young are indeed “innocent” in some way and therefore shouldn’t be susceptible to death and disease. Organisms are equal opportunity targets, and the vast majority of infants aren’t closely related to you biologically, so saving them confers no advantage.
That said, don’t feel lonely. I have the same feelings. I feel far worse when I see a suffering child than when I see a suffering adult. I feel more pressure to work on their behalf and to preserve their lives. And just to add a sexist zest, I feel much more protective of females than of males.
Paul Lurquin says
Is abortion an option?
“why should they be exempt?”
I think the better question is why some people demand exemption while conferring non-exempt status upon others. Everyone regardless of age, race, sex, gender identification, sexuality etc should be exempt from preventable suffering because no one deserves otherwise. I think that includes children, innocent or not. To take a purely “nature red in tooth and claw” stance flies in the face of the 3000 or so years of advancing philosophical understanding of the human condition.
Just to pick a nit.
PZ Myers says
You’re confusing ought with is. Of course babies are not exempt from suffering — as this case shows, they suffer horribly. What we ought to do is try to minimize the suffering by, for instance, encouraging research that might lead to a reduction.
No, abortion is not an option. Hirschsprung’s disease isn’t diagnosed in the fetus, but only after birth.
Mark (Monty) Montague says
My knee-jerk reaction is that it seems like a no-brainer to use a slightly modified pacemaker to induce peristalsis, if it’s just the neurons that are missing, and the muscles are fine. I’m guessing that this doesn’t work because without the nervous system part to drive it, the muscles atrophy or never develop?
Note: I’m particularly in the “ignorant computer scientist” camp for this, since I had never heard of this condition until 5 minutes ago… so this may well be a pretty silly question, but I’m still curious.
ctenotrish, FCD says
And to follow up on PZ’s comment r.e. the abortion option, fetal testing for this disease, should it exist, would be complicated by the fact that the disease can be caused by mutations in several different genes, located on different chromosomes. Only if a couple with an affected child had a second pregnancy (without pre-implantation genetic diagnosis), and if the causative mutations in the first child were known, and if fetal cells for testing could be collected from the second pregnancy, would there be a possibility that a clinical abortion could be an option. In such a case, genetic counseling would certainly be important for family planning . . .
“Gene map locus 20q13.2-q13.3, 19p13.3, 10q11.2, 5p13.1-p12, 4p12, Xq28
A number sign (#) is used with this entry because of evidence that the phenotype can result from mutation in any one of several different genes operating either alone or in combination. These mutations include dominant mutations in the RET gene (164761) and a recessive mutation in the endothelin receptor type B gene (EDNRB; 131244) on 13q22; see also Hirschsprung disease-2 (600155). The genes for endothelin-3 (131242), glial cell line-derived neurotrophic factor (600837), and endothelin converting enzyme-1 (ECE1; 600423) have also been implicated in HSCR. Hofstra et al. (1997) pointed out that mutations of these genes give dominant, recessive, or polygenic patterns of inheritance.”
I’ll read up on this and see what I can do. Including brutally smacking down the first few callous fundy scumbags who try to commandeer this thread to rant about abortion.
No one says they are.
But more importantly, to me, is why should all of mankind suffer because some tart ate an apple off a tree? Doesn’t that seem to be more than slightly ludicrous? BILLIONS upon BILLIONS of people to suffer from disease, pain, and eventually death, all because some immature git put a tree in a garden and hid behind a bush ready to say “gotcha.”
What has innocence to do with it. If PZ is anything like my wife (who went to college with him) says he is, he really wouldn’t want anyone to suffer. And speaking for myself, neither do I.
Human suffering is appalling. And, I don’t need some sugar daddy in the sky to feel that way. It comes from the very natural biological process of empathy.
That’s not even relevant. However, if it were, it’s massively short-sighted. What happens if one of these babies grows up to be a medical researcher and 30-years from now, figures out how to stop and reverse aging. PZ is younger than me and he could very well be alive and benifit.
Not likely. Absurd to be honest. But no more absurd than your position that it makes no sense to help others unless there is some selfish gain to be gotten.
Go for you, but so what?
This is certainly worthy of study. TPN cholestasis and liver failure is a very serious problem when it occurs.
I’d be cautious, however, about equating Hirschprung’s with TPN dependance. Hirschprung’s can rarely result in TPN dependance, but Short Gut Syndrome, which can result from any number of different diseases or injuries, would be a more accurate (and debilitating) clinical condition for what is being discussed here.
PZ Myers says
Yes — follow the links, and you’ll see that short gut syndrome is specifically the case at hand.
“My knee-jerk reaction is that it seems like a no-brainer to use a slightly modified pacemaker to induce peristalsis, if it’s just the neurons that are missing, and the muscles are fine. I’m guessing that this doesn’t work because without the nervous system part to drive it, the muscles atrophy or never develop?”
The idea is a good one, and similar therapies have been attempted in people who have severe bowel dysmotility (though none have been very successful to my knowledge). Unfortunately the smooth muscle of the bowel is not fine. The lack of innervation during development is a decidedly bad thing for the smooth muscle of the bowel. The denervated section is tightly stenotic and cannot be salvaged.
Tim: Since when does the Christian religion hold that babies are innocent? It’s my understanding that, thanks to the Original Sin(tm), all humans are born stained with sin. Otherwise, there’d have been no need for Yahweh to demand the death of his Lamb-Child. Babies, especially those babies who haven’t made the decision to allow a 2000 year old Jewish zombie into their hearts, are arguably LESS innocent than your average Born Again(tm) Christian.
Short version: The statement “Babies are innocent” is a deeply irreligious statement, and thus par for the course with PZ.
Tim, like many theists, tries to “understand” naturalism by mixing it up with supernaturalism and turning it into some hybrid mutant. Supernaturalism posits a highly moral universe which has good and evil structured into the foundation: following “nature” is therefore following the will of God, and vice versa. In naturalism, the universe is not itself moral: morality is strictly a product of human development and relationships. There is no moral mandate to obey the higher laws of nature in order to do what is right.
Atheists “replace” God with evolution only as a causal mechanism, not as a moral authority. Deriving ethics from how evolution works makes no more sense than deriving ethics from how gravity works.
Tony Kreamer says
I don’t know that much about Hirschsprung’s Disease, but I’ve got a cousin who had it and spent most of the first 5 years of his life in and out of the hospital. Now he’s a mostly normal kid, if a bit skinny, and I believe he’s missing a lot of large intestine.
Barn Owl says
Necrotizing enterocolitis is a more common cause of Short Gut Syndrome and intestinal obstructions, especially in low birthweight, premature infants; sometimes small bowel transplants are performed, as that’s the gut segment typically affected. Not sure whether such transplants would work for more distal segments of gut, as are affected in Hirschsprung’s- I guess a colostomy would be more usual in that case.
NEC generates a lot of suffering in preterm babies and in many infants who have had surgical procedures, but unfortunately it has neither an eponym nor a genetic/developmental cause. Less glamorous internet fodder, I guess.
Mrs Tilton says
let’s leave aside for the moment what Tim and theists of his sort think. Other theists — most of them, I’d hope — would think pretty much exactly as you and PZ do: “Suffering child; OK, let’s do what we can to alleviate the immediate suffering: then let’s carry out research to see whether we can’t solve the problem altogether.”
In suggesting that we should limit our efforts at alleviating suffering by strict kin-selection standards, Tim shows himself to be a jackass. On behalf of all non-jackass theists, I’d like to apologise for him.
In more general terms, I think any thoughtful theist, confronted with the fact of M. Hirschsprung (or a vast array of other childhood diseases, many of them far worse) can only say: this suffering is horrible; and it has no “higher purpose”. All one can do is make an effort (if one is in the appropriate line of research) to find something to alleviate the suffering; and failing that, admit that life is very often hideously unfair.
The first thing that popped into my mind when reading this was, “Lorenzo’s Oil”. Of course, the illnesses have nothing to do with one another, but the notion of an expensive nutritional product that needs clinical testing so that parents can get it for their children is so similar.
So what this product needs is for someone to get this (equally compelling) story out into the public as a book or magazine article to drum up public interest.
It is really neat that just switching the fats could make that much difference. Lets hope they can do the trials quick before more kids have a problem.
What if the money and resources diverted to keep these children alive would have helped another child develop and become the medical researcher who deals with aging?
An even better question – what if people stop making stupid arguments centering around ludicrous hypotheticals and limit themselves to rational discussion?
Well, I am sure when the crackpot kook IDers get hold of this they’ll point to it as gods will. Just waiting for that to happen.
Well, this has been fun. I tossed out a nugget for discussion and got back vilification and assumption.
It would appear that atheists are no more immune to mental shortcuts than anyone else. It’s been entertaining to see how my words have been answered, and all too often by the dreaded practice of quote-mining.
My original comment had to do strictly with PZ’s posting, where he used the term “innocent little babies”. This struck me as odd phrasing from a biologist and atheist. It seems to indicate a feeling of preeminence for babies, as if they seemed to him to be special cases, more worthy of tears than adults might be. He did not use the term “infant”, for example, which is not nearly so emotionally evocative. I understand that viewpoint. I share it. I just wonder why I do.
From a biological viewpoint alone, there is no “innocence”, not even in human terms. Nor is there a place for worrying overmuch about the children of other tribes, because they will likely grow up to challenge your own children for resources. The argument that the child may become a world-famous researcher surely isn’t a biological argument. We did not evolve in a world with world-famous researchers. We evolved in a world of treachery and violence, of unceasing struggles for limited resources.
So whence comes PZ’s universal compassion? I supplied no answer, but let it hang in the air. I merely nudged PZ about it, but neither he nor anyone else took it at face value. To present the question, to wonder why an atheist biologist would write such a plea, is obviously tantamount to making a theistic argument. It is nothing of the kind. It is inquiry.
It seems that questioning PZ’s own responses evokes the same resentment as if I had questioned Pat Robertson on a Christian blog. Curious, but not really unexpected. No matter how open-minded the crowd believes itself to be, there is always some groupthink. I recall years ago that on a forum devoted to feminist issues, I encountered the assertion that women earned less than men. Curious, I asked for the citation so I could see the data for myself. I thought it a reasonable request, and one that any economist, political scientist, or sociologist might eagerly provide. Nothing of the kind. I was set upon as a misogynist, an unbeliever in the obvious, and therefore to be shouted down. One respondent mentioned the New York Times as his fount of all wisdom. Others merely shrieked at me. No one pointed me to studies or data. I had to find these for myself. They are surprisingly not widely available, at least not in academic form. One must dig for them. Once found, they are illuminating. The story is complex.
In the present case, it seemed to me that PZ’s odd compassion might stem from social conditioning. If we’re seeking rational reasons for behavior, why shrink from simply admitting that compassion may be learned? If we are biological machinery, then compassion itself, especially for those not of our close genetic relationship, is surely learned behavior. In our society, such universal compassion is typically linked to religion in a muddled morass of emotional response. We see a picture of a little child with a dysfunctional liver or cleft palate, and we feel pangs of guilt, remorse, protectiveness, or frustration. When we express those feelings, we’re rewarded. If we were to say “Hey, not my kid, thank goodness!”, we would be shunned. If we learn this, rather than express it from birth, then we are but what we are taught.
Simply because PZ’s compassionate remarks warmed readers’ hearts is no reason not to wonder where they came from. Science presupposes that causes and effects are linked in ways that can be studied. I took the opportunity to ask an unpopular question – if even the famously rational PZ Meyers is prey to simple emotional responses where other people’s children are concerned, then where has he acquired it? Is irrationality, then, an integral part of us? For surely encouraging competitors to one’s own children when they are patently not of “the tribe” is counterproductive. What little we know of stone age cultures bears this out. The few bands and tribes of today that come close to stone age living are often in a perpetual state of low-level conflict. Contrary cases, such as some Polynesian tribes, were usually isolated from other tribes and therefore not constantly threatened. It would be seen as madness for struggling tribes to help an unrelated tribe’s children in any way. Tomorrow those children will try to kill your own offspring. Just to unquestionably accept the warm and fuzzy feeling we all know as “compassion” is not in the spirit of inquiry as I understand it. It is familiar to us, but odd.
When I see an example of something inexplicable but very real pop up in front of me, I want to know more about it. So I asked about it. Perhaps I phrased my comment clumsily. But it seems to me that the population of readers here has been eager to denounce believers in religion for their unthinking behaviors, yet also seem reluctant to dispassionately examine parts of their own world, such as I called for here. Some things just seem to be inherently good, don’t they, like being worried about strangers’ livers? I just asked the question, and by simply asking it I’ve been summarily labeled with the worst of all atheistic curses, a theist.
No one has actually asked me whether I am or not, you see. It was sheer assumption. If one hangs about in a tribe’s campsite, suddenly questioning the habits of the tribe is dangerous. There is a strong human presupposition of “them” and “us”. If you do not seem strongly and publicly supportive of “us”, then you are “them”. I, my friends, am neither “us” nor “them”. Yet by questioning a behavior in this tribe’s territory, I became a “them”. Interesting, don’t you think? There may well be frequent readers of these comments who will now always be suspicious of me. Sad, that. But understand that I take up positions one-by-one for the most part, so I am sometimes congruent with arguments here, and sometimes not. Why should it be otherwise?
Ya know, the title of the post immediately made me think “…for dessert?”
Cuz I’m a sick, cheeky bastard. =P
But I like that once again, science makes things a little better.
Speaking of concrete vs. hypothetical, I’m interested in the idea PZ expressed in his opening post, to wit:
“Let’s raise the profile of this work and try to get some media attention; reducing the need for infant liver transplants sounds like a worthy cause.”
It sounds like a worthy cause to me, too. I will try to write a short article about it for one of the blog magazines to which I sometimes contribute.
PZ Myers says
You’re overanalyzing. Stop it.
Babies are cute. Babies are innocent. Babies make oogie-woogie noises and wiggle. I don’t think they, or any other human being or creature, deserve to have malfunctioning guts that swell up with unexcreted shit until they pop and the organism dies of internal bleeding and sepsis. Being an atheist does NOT imply that we think otherwise, so when you make this casual assumption that we ought to all be callous, insensitive robots, well, you’ve pretty much set yourself up as clueless.
We’re human and we value our humanity. You’re always going to get called out and abused for your superficiality if you act surprised when atheists express empathy and concern and love.
My own short answer: compassion towards those “of the tribe” appears to be hard-wired into our biology through evolutionary mechanisms. The tendency to universalize such compassion is I think the result of a choice to view all people as, in a basic sense, members of “the tribe.” In PZ’s case, this choice is inspired not by religion (we are all children of God, made in His image) but by a philosophy informed with science (we are all the same species/family, made in each other’s image.)
In examining your question, that PZ is an atheist is not as significant as that he is a humanist. True, humanism is not compelled. Neither is belief in a God that values all people equally. What God we believe in or what philosophical stance we take is, I think, the result of a complex mix of biology, culture, community, family, personality, and informed reason.
Barn Owl says
Optimistically, Omegaven looks to be a promising and beneficial treatment for babies who’ve developed liver dysfunction while on PN, as a consequence of Short Gut Syndrome/Hirschsprung’s. Further clinical testing that could potentially abrogate the suffering of many babies would be great, but how to fund this research? The EurekAlert article states the following sources of funding for Dr. Puder’s studies to date:
The animal research and the costs of importing Omegaven were paid for by the hospital’s Department of Surgery, the Garret Smith research foundation, and individual family donations.
Hmmm…no NIH money specifically mentioned. Maybe there isn’t much to go around. And the WSJ article from 2006 makes it sound as if the German manufacturer, Fresenius Kabi, isn’t going to play along with funding clinical trials for Omegaven:
Fresenius Kabi says it doesn’t want to invest the resources to test both Omegaven and its new drug, SMOFlipid, for approval in the U.S. “We are convinced that SMOFlipid is the better product,” says Mr. Ducker. It has already been approved for use in adults in some countries, including Germany and Sweden.
Thanks to the current Clown-in-Chief, his bellicose cronies, and their irredeemable sociopathy, there’s kind of a shortage of federal funding for biomedical research, in case y’all hadn’t noticed. Clinical trials are expensive to initiate, manage, monitor, and evaluate. If the pharmaceutical companies won’t play along (and there are whole other sets of problems even if they do), where does the funding come from?
I know, *yawn* *yawn*….sorry to ask the boring questions, but I’m not that interested in the Atheist vs. Theist angle. I’m more interested in the policy decisions about federal funding for biomedical research-how should decisions be made, when so much money is being funneled off to the Iraq War? Which, sadly, creates a whole new set of needs for biomedical research, for which there will also be insufficient funding.
Since the Iraq War was started, and is now maintained, by a secular group of True Believers, perhaps you *should* be more interested in the Atheism vs. Theism debate, because it’s really a Rationality vs. Religious faith debate – and faith is what’s responsible for there not being enough medical funding.
Thanks, Dr. Myers. Your response above is perfect. That I don’t believe in God-given truth has nothing to do with my desire to make humanity more humane…quite the contrary, I should think. I hope that we discover new treatments very soon.
I see that Tim did not answer factlike’s excellent question. Perhaps he adheres to some other religion that does teach that babies are innocent?
Of course there is. The word has other meanings besides “sinless”. For example, children are cognitively innocent (naive, inexperienced) and have less means of dealing with severe pain.
Your conclusion does not follow from the premise. You don’t seriously believe cooperation with non-kin has never evolved, do you?
Are newborns and chimps conditioned to feel empathy? (See: Spontaneous Altruism by Chimpanzees and Young Children)
Or look at the relationship between humans and dogs. According to your strawman version of evolution, there should be no way humans can feel empathy toward dogs (descendants of former competitors, wolves, and genetically much more distant from you than any sick baby), without being religiously conditioned to do so.
“So whence comes PZ’s universal compassion?”
The quick answer is that it comes from species preservative and social engagement functions of the cingulate cortex, prefrontal cortex and oxytocin, which allow for bonding and caregiving. And as Sastra says in #25, this is modified by a belief that we as humans are all of a kind, and from the same family.This sense of familiarity extends this inborn evolutionary sense of empathy and compassion. And this is the true basis of morality, not some clay tablets written by a bronze age shepherd who hallucinated a talking bush fire.
“If we’re seeking rational reasons for behaviour, why shrink from simply admitting that compassion may be learned? If we are biological machinery, then compassion itself, especially for those not of our close genetic relationship, is surely learned behavior.”
Compassion, like all behaviours, can be learned.Or at least practised so as to come about easier. But you need the above mentioned neural and hormonal circuits to be working correctly.
“Doubtless your view is a biological urge to protect our young, but perhaps you’ve also become infected by the religious precept that the young are indeed “innocent” ”
Tim you are dumb and would appear to have your head stuck up some kind of holy black hole. Considering children innocent and having compassion are HUMAN charateristics that have been annexed as exclusively religious by nutty true belivers. Some religions actually try to take away from that innocence (which I happen to think we overdo by the way)with the concept of original sin.
Barn Owl says
Since the Iraq War was started, and is now maintained, by a secular group of True Believers, perhaps you *should* be more interested in the Atheism vs. Theism debate
Sorry, I’m not in the habit of applying suggestions from unknown internet personas (-nae?) to alter my behavior or thought processes, regardless of how intellectually or rationally superior that persona may believe him/herself to be. I remain stubbornly uninterested in the Atheism vs. Theism debate, as I don’t think it’s a particularly productive one in the context of federal funding for science (it’s unproductive in many other contexts, for that matter). I think you can educate Believers about science, and convince them of the importance of federal funding for biomedical research, but trying to turn them into non-believers, deriding their thought processes and sneering at their spirituality, and THEN trying to convince them to support research funding, is a narcissistic fool’s approach, IMO.
You’re the same individual who posted this in the “Atheists fire a shot” thread:
No scientist believes something that cannot be properly demonstrated.
So I am to reject my Christian, Jewish, Muslim, Buddhist, Hindu, and Wiccan colleagues and collaborators as “Not Scientists” then? They all believe in some things that cannot be properly demonstrated, though in my experience this does not interfere with or influence their ability to do good science, as determined in part by peer-reviewed publication and federal funding. I’m not in such an exalted position to retain either professional security or personal happiness if I constantly question the rationality and credibility of Believers who are also scientists; yay! for you if you are in such a position, Caledonian.
I won’t deal with your canards about “militant atheism” (which you may or may not have referred to by that name at any point), but this needs explanation: what is true and what Caledonian probably meant is that belief in something that cannot be properly demonstrated is unscientific, and when held by a person engaged in the pursuit of science creates a potentially intense conflict of interest (particularly if the person is highly emotionally invested in the unscientific beliefs in question) should friction arise between research avenues or results and the assumptions derived from their beliefs. Nor is this problem purely hypothetical; notably, some of history’s greatest scientists have allowed their unscientific beliefs to influence their scientific work, and thus done monumentally foolish things like throwing up their hands and concluding that divine intervention is necessary to explain the stability of the solar system (Newton) or rejecting a priori fundamentally non-deterministic interpretations of quantum phenomena (Einstein). And there are countless lesser-known examples of similar phenomena, where scientists have come to conclusions later shown to be absurd because their ideological preconceptions colored those conclusions “obvious,” or have simply stopped pursuing an avenue of research, when it came into intense conflict with their personal beliefs. The fact that many theists are able to compartmentalize effectively enough to do science is a relief, but anxiety on this score is not unreasonable.