April 21, 2014
nobabies.net
Marcia McNutt
Editor in Chief
SCIENCE
1200 New York Avenue NW
Washington, DC 20005
Dear Marcia McNutt:
I was much instructed by reading your article (Marcia McNutt The New Patrons of Research SCIENCE vol. 344 no. 6197 April 4, 2014 page 9). It does seem to follow a pattern. People of vast wealth do seem to be calling the shots culturally and politically, so it only makes sense that they dominate science as well. It had not registered with me, but when someone makes a massive gift to, let us say a university, and stipulates that every cent be spent on his pet project with nothing going to maintaining the ongoing enterprise of the university itself that person in effect deprives the university of resources it would otherwise have to pursue something else.
I really don’t see a way around this. A wealthy potential donor can easily shop around and find where the money will “do the most good” for his or her self, which means of course “do the most harm” to everybody else, which may in fact be the instinct that got him or her rich in the first place.
I think it fair to expect that anything scientific that promises to make money will get funded. My own observation is that anything scientific that promises to spend money will also get funded: shock and awe on the home front; people get excited when big bucks move around.
To the extent that private funding simply gives a nudge here and there to research, well and good, but a couple of things could get lost. Suppose there were a hitherto unsuspected law of nature; this would not get funding either from private or public resources. It could only be clarified by some interested professional pursuing it on his or her own initiative and resources. And there are not many in a position to do that. This is lamentable. I’m sure nature has plenty of more surprises for us of the form that dark energy takes: vast, incomprehensible, fundamental.
The other problem with the current mechanism of funding is that there could be an issue of substantial social importance that simply is too cheap and too unproductive of any profit to get attention.
I’m not going weird on you. Hold on. How would you like to save the lives of otherwise healthy young people at a marginal cost of – oh I don’t know – twenty five cents per life at the margin?
Consider Rh incompatibility. The deaths and brain damage it causes have declined dramatically over my lifetime. In the rich world they have almost vanished. Oddly, considering the interest in genetics, this triumph of medical genetics is almost unknown in the world at large. The bad news is that is still going on. Not all countries are rich; not all have modern medicine.
I base this on three lines of evidence. The first is a basic understanding of Rh incompatibility. The Rh locus (they’ve changed the terminology, which I always find a bad thing to do if no new concept is expressed) can hold any of a number of alleles, which we can simplify by calling positive and negative. The positive allele hangs an antigen on the erythrocyte, which the negative allele does not. If a man with at least on positive allele and a woman with only negative alleles marry you can get an Rh negative woman bearing a positive child. The first positive baby generally has no problem; the mother’s immune system is not exposed until birth and has no time to mount an immune response. (Current thinking is that the first baby may indeed have problems, but we are going for simple here.) Subsequent babies (absent modern intervention) are at risk of brain damage and death as the mother’s immune system lyses the fetal erythrocytes. The syndrome gets worse with sequential positive pregnancies. In the end the anemia of the fetus can cause heart failure, hydrops fetalis, and the baby can bloat and get stuck in the birth canal, which is fatal to mother and child (again in the absence of modern care.)
The second line of evidence is that the Rh negative allele is not distributed at random among humans, but is most prevalent among Berbers and Basques. Europeans generally have more than Asians. But critically there is a substantial prevalence in Sub-Saharan Africa, where often the social and political situation is too unstable for there to be assurance of the best medical care. In other words, there we are back to first principles; otherwise healthy young women are dying even as you read this, and children are being born brain damaged where there is the least social support for them. That, at least is the inference given the demographics and the pathophysiology. I don’t think it has been studied directly.
The death of the fetus is bad enough. The death of the mother, who you know already has one child, is horrible in the extreme as she goes septic from the dead fetus rotting in her birth canal. The emotional trauma to everyone involved must be immense, although again it has not been studied so far as I know.
The final line of evidence is that this happened to a friend of mine, alas now gone, and she was younger than I am. Maybe it was twenty or thirty years ago. Even then, when the surgeons had finally managed to get the dead fetus out of her birth canal, she was only told. “Never have another baby.” They did not say, “Get yourself an Rh negative sperm donor,” even though that would have prevented any problem no matter how her blood seethed with antibodies.
Preventing ninety percent of the tragedy would be easy. Just go to places that are at risk and do the blood test at a cost of pennies per person. Then explain that in order to avoid this people just have to marry positive with positive and negative with negative.
Sure, you can make it more complicated. You can say it’s all right for a negative man to marry a positive woman or for an O positive man to marry an AB or AA or BB negative woman. That would be dysfunctional. You need a simple rule that is fair to all.
At the margin the greatest cost would be the disposable needles. The test agents can be made cheaply in great quantity. That is where the pennies a person guess comes from. Actually the greatest cost would be setting the system up and making quite sure the disposable needles really were disposed of. Refrigerating the test agents would have to go in there, too.
You would only have to drop by once every ten years. Rh status is forever. Between times, no matter how awful the political turmoil, the people who matter will remember.
There are three problems. One is that it would be cheap. This is no space exploration or nailing down the Higgs bozon. There is no vainglory like landing on the moon. So there is no prestige to be expected.
Second, there’s no money in it. The only people who benefit are those who are spared a marriage that would kill the wife and brain damage or kill children. Don’t expect gratitude. If you get a simple, “Why didn’t you do this sooner?” consider yourself lucky.
Third, if word spreads that healthy people have some other healthy people whom they can marry and some they have no business even considering then that kind of gets in the way of globalization and mass marketing, and your billionaire friends aren’t going to like that.
Oh, yes. No Nobel prize either. You can’t do an ethically defensible study in which you withhold information from some and not others. But for some reason it seems perfectly ethical to withhold information from everybody.
Yeah, yeah, some day we’ll all be rich and this will be a matter or morbid history. But those women are dying right now. Can you imagine how it must smell?
I do not apologize for the digression. But I stick to my guns that big money science distorts socially valuable science.
If you can shrug off that one, where the science is flint hard and the suffering incredible, please stop reading now. This next is highly abstract, based on sound evidence but not widely accepted principle. It is orders of magnitude more important. Rh incompatibility cannot kill us all. This could.
The brutal fact is that what people do depends on who gets born. If nobody is born, it’s over. Nothing else threatens that. Nobody predicts that global warming will be so intense that the South Pole will be to hot for human habitation. The chance of an impact from space that kills all of us is very remote. There are enough nuclear weapons to kill everybody, but there are also enough brickbats to kill everybody; the will is not there to use them all.
But the developed world has not been able to produce enough babies for long term survival for a generation. The barbarian is not just at the gate; he is getting drunk in city hall.
If you want a population to survive there must be a sufficient number of people marrying people who are reasonably near kin, say within sixth or seventh cousins.
You know it’s true. Since the dawn of history we all married cousins and there were adequate babies. Over the last century or two we stopped marrying cousins and the babies have gone away. You need more evidence; here it is hoarded up on a web site:
http://www.nobabies.net/A%20January%20summary.html
Notice that the funding issues are similar.
It does not cost heroic amounts of money. People just need to know.
It doesn’t make any money. It just saves civilization or maybe all humanity.
It does not further the cause of mass migration, moving to change jobs, globalization, mass marketing and the other things that have made billionaires billionaires.
And if you can figure out how to get a Nobel Prize out if it, you deserve one.
So there is indeed an up side to having the rich be the patrons of science. But there is a down side, too.
What do you think?
Sincerely,
M. Linton Herbert MD
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