“Should prospective parents seek information about gene variants that increase the risk their children will develop diseases as adults? Should physicians provide that information?”
So asks Ronald Bailey, only just this side of rhetorically, in his similarly named “The Moral Case for Designer Babies: Should parents be allowed to know if their fetus will get Alzheimer’s?”
Regular readers will know that I am a fully qualified (self-awarded) bioethicist, and given my track record of commonsense and non-lunatic judgments—contrasted with, say, Julian Savulescu or those academics who called for “after birth abortions”—I am just the man to speak to this.
Now Bailey doesn’t like dementia or Alzheimer’s, which is fine position to espouse. I don’t like them either. But Bailey would eliminate these maladies by not letting those with genes “for” these diseases live, whereas I would prefer a more traditional cure, say therapy or via drug discovery.
Before we begin our discussion of genes, remember that it is a difficult subject, subject to errors of every kind. Why, just this morning Discover boasts the breathless headline “Couples Share Similar Genetics” over an article which tells us scientists have just “discovered” what everybody else already knew. This form of scientism is acute in academia, where truths are not acknowledged unless they’re accompanied by wee p-values. But let that pass.
Bailey would like wives to remove their eggs and husbands their sperm and give them over to a laboratory, the eggs to be fertilized and then examined for favorable and unfavorable genes. Those embryos with unfavorable genes would be killed, and so would some with favorable genes, though a one or two would be implanted into the mother in the hopes of a successful pregnancy.
Another route is to let the fertilization happen naturally (the Internet is nothing if not a fecund place to discover how this process works), scan the mother sometime after, and then kill those tiny human lives which are genetically unacceptable, and let live those which are acceptable.
The third option, which Bailey labels “genetic ignorance”, is the way he, Bailey himself, and you too, dear reader, arrived on this plant. We thus have good evidence that “genetic ignorance” fashions worthy, morally valuable, if not partially flawed, human beings.
What offends Bailey is the “ignorance” part of this third method. A question perpetually on the lips of the Enlightened is, How could nature function smoothly without central control by high-degreed and well-credentialed, i.e. non-ignorant, experts? You will have heard that question asked in other contexts. It too is rhetorical, meant to be convincing just by its hearing, any opposition put down to stupidity or bigotry.
We really have two ways before us: scan and kill, and naturally natural. The first requires experts and is scientific, and the latter can even be done by Brandeis University graduates. Naturally natural needs no explication. Scan and kill does. There are two scenarios.
Scenario 1: No uncertainty
Suppose there is no uncertainty in the genetic marker. Having the gene (or genes; I’ll write just “gene” for brevity), which we can without error measure, necessarily leads to dementia at age…what, exactly? By 60? 70? Later? Or maybe by as early as 40? You have to suppose something. At any rate, we implant some eggs and we kill those embryos that have this gene. The babies that make it through pregnancy will therefore not—of this we are certain—develop dementia.
They’ll still die, though. (Note to optimists: We all will.) Denying dementia condemns the babies we allow to live to die of something which is not (or is not associated with) dementia. Doubtless these deaths will be from a variety of causes, some less horrible, but some more horrible than dementia. Dying isn’t always pleasant.
Two caveats. Don’t forget that not everybody who would get dementia would live long enough to develop it. And if no babies are allowed to be born with this gene the benefits conferred by it will also be lost to us.
“What’s that? Benefits! Are you crazy?”
Oh, you heard me. Benefits. Perhaps those bearing this forbidden gene are braver than those without, or are better, hardier mothers, or are more creative; or maybe they’re the type that make the best geneticists. Who knows? I certainly don’t, and neither do you.
Maybe dementia, rough as it is on the sufferer, brings families closer together, and therefore creates a healthier society. I don’t know that that is true, but neither do you know it is false. Instead, all we can say is that we do not know what the effects on the whole of society will be. It is rank superstition, pure scidolatry, to say our tinkering will only be positive.
Just think: banning smoking, the nouveau Puritan impulse, causes people to live longer. And to eat more, and to require more of all resources. And maybe that’s good. Then again, maybe it isn’t, because while people who would have smoked will live longer (on average), they’ll have a less interesting and pleasurable life. Smoking is pleasurable to many. I have quoted these words from Mark Twain so many times we should all have them by heart:
There are people who strictly deprive themselves of each and every eatable, drinkable and smokable which has in any way acquired a shady reputation. They pay this price for health. And health is all they get for it. How strange it is. It is like paying out your whole fortune for a cow that has gone dry.
There is always a small subset of us who are certain sure that once program X is implemented, Utopia is right around the corner. But let’s not get too far afield.
Scenario 2: Regular uncertainty
The genetic markers will not be known unambiguously. Complex diseases and traits are not driven by a gene, but by combinations of genes and environment. Identical twins raised apart often develop different personalities and enjoy different levels of health.
Measuring the genes admits one kind of error. Civilians might be amazed to learn that medical tests are far from perfect. Another form is tying the genes to the maladies. This error is huge, simply because the gene-environment interaction is strong and hugely variable. That is, even if we could without error measure the genes of embryos without error, it is only an educated guess whether the genes we let pass are the “right” ones. Some of the babies we let live, in other words, will still develop dementia, perhaps of forms as yet unclassified. Hey. Mistakes happen. And we will wrongly kill many nascent lives which would have lived without the disease.
Effects
“Sally says you’re a natural. Is that true?”
“He is! His parents didn’t scan him!”
“Ewww. Don’t touch him! Get away from him!”
One thing never short of supply in the credentialed class is self-esteem. They are continuously discovering ways in which they are superior to those who they would rule over. I therefore am willing to bet any amount short of $1,000 American that once Bailey’s scan and kill becomes routine—for those who can afford it, and there will always be echelons—that having scanned babies will be (a) a status symbol, and (b) treated deferentially. “Little Malcom is a scan? Of course we have a slot for him.”
For it isn’t only dementia-genes that the elite will cull. They’ll also whack those genes said to be related to “aggressive” or “racist” behavior, or they’ll favor those related to “genius” and “creativity.” The error in these judgments, i.e. knowing we have the right gene, goes up exponentially. But uncertainty never stops the purist. “Playing God” was always an apt metaphor, but only in the sense where play is emphasized.
I’ll let readers put in the appropriate Brave New World references. Or maybe it’s The Boys from Brazil?
You make it too easy for yourself, you never ask the really hard questions (a trend I noticed many years ago). You discover that the designer solution encompasses abortion and LO AND BEHOLD you find it bad. Well, doh I didn’t even had to read your long winded post. Of course this is your position.
But if you are actually a “bioethicist”, you shouldn’t refrain from asking the real hard questions. Hardly ever the world is about easy choices. The problem (at least for you) is when they will find a method wherein there is no “Abortion” but there is Design (as in depicted in Gattaca). Only then the question becomes interesting in what a catholic bioethicist has to say, but then again I wonder if you really like hard challenges.
Briggs apparently your secret computer enemies have corrupted your flawless spelling and have posted:
“…and then kill those tiny human lives which are genetically acceptable, and let live those which are acceptable.”
When you must have actually written:
and then kill those tiny human lives which are genetically unacceptable, and let live those which are acceptable.
(Notice the difference between “acceptable” and “unacceptable”)
Bert,
Arrgh! They’re everywhere and gaining in strength!
The referenced article ends with the following:
“The researchers reject the notion that genetic ignorance is somehow liberating. “Instead of limiting a child’s potential future, knowledge of genetic risks can offer a greater opportunity to inform possibilities for a good life,” they point out.
“And that’s the essential point. Whatever some bioethicists might believe, autonomy is never enhanced by ignorance.”
The major point of the article was obtaining knowledge — perhaps to guide fertility & birth decisions, but ALSO [if not mostly] so a person can grow up grow up knowing their pre-disposition/genetically-based health risks and, so informed, be capable of adjusting their lifestyle accordingly should they desire.
What’s wrong with more knowledge to guide one’s choices to a more healthy lifestyle, should one care to choose that?
Of course, based on the blog essay one has no clue of the actual breadth of the article being critiqued…
And why did the blogger (again) pick out & present only one particular subset of the reference? Luis touches on this….
The blogger is not a “Statistician to the Stars” (no evidence apparent for that anyway)…consider refining the revamped blog banner to something like: “Ham Handed Purveyor of Roman Catholic Doctrine” or something similar that actually aligns with the blog’s content.
@ Luis, Ken
While I found some issues with our host’s post myself, yours boiled down to, “that’s exactly what I’d expect a Catholic to say.”
Who will scan the scanners? 😉
Yes, cull out dementia. Oh, and asthma, club foot, deviated septum, …. How many babies will survive the gauntlet?
Oh, and while we are being scientific, let’s cull out the propensity for mysticism (science deniers).
In the interest of social order, maybe we could reduce the number of rebellious, non-conformists, Republicans, Democrats, Communists, Libertarians (depending on what ideology is in vogue).
Sounds like a utopia to me!
Funny that all this is coming from victims of “genetic ignorance”. What if supporting the culling of human beings is some genetic malady? I think these people are already showing signs of some sort of ethical dementia.
Does it strike anyone else that in his posts, whenever Matt makes subtle, deep, challenging, cautionary points about ‘knowledge’ and/or epistemology (what we know, how we know, how sure we can be that it’s true), this very often generates extremely confident remarks to the effect that Matt is once again being ham-handed, dense, unintelligent, and unlearned, and is nakedly and uncritically following an obviously abhorrent agenda?
Johnk,
Say! I noticed the same thing!
@JohnK:
“Does it strike anyone else that in his posts, whenever Matt makes subtle, deep, challenging, cautionary points about ‘knowledge’ and/or epistemology (what we know, how we know, how sure we can be that it’s true), this very often generates extremely confident remarks to the effect that Matt is once again being ham-handed, dense, unintelligent, and unlearned, and is nakedly and uncritically following an obviously abhorrent agenda?”
I blame them’ awful genes. Maybe we should cull these in the future? Genetic ignorance is no excuse! (runs for cover)
“Of course, based on the blog essay one has no clue of the actual breadth of the article being critiqued… ” Maybe not but as he provided a link you could always go and read it. I found that, in my view, the article muddled two distinct issues. First genetic testing so parents could dispose of unsuitable foetuses and second, genetic information that an individual could use to anticipate and so ameliorate problems arising from his own genetic defects.
“Instead of limiting a child’s potential future, knowledge of genetic risks can offer a greater opportunity to inform possibilities for a good life”. Clearly, the disposed foetuses don’t get a potential future. And genetic ignorance could be managed at any age after birth. There’s no need to do it in the womb or before. So what is the actual reason for performing the test as early as possible?
Is after birth abortion the same as retroactive birth control? I’m all for that if you can do it to teenagers.
Ken:
Ahh, a subject near and dear to my own heart, and not just with Briggs. We all do it, and by we, I mean I as well. One reason I read Briggs is to check my own assumptions. Another reason is to maybe rebuild some bridges between (non)theistic believers and in some small way tone down rhetoric. Yet another is that I like to throw rocks at silly arguments.
I’d like to think my first two reasons are the primary ones I come here, but I really don’t trust myself to be that pure when it comes to my subconscious agendas.
Briggs:
Several years ago I went to Maker Faire in San Mateo, CA and had a fascinating chat with this group of recent college grads who had designed a DIY genetic engineering kit for tinkering with cyanobacteria — blue-green algae.
For those not familiar with these bugs, they do a very plant-like thing: convert sunlight, atmospheric carbon dioxide and nutrients into sugar for their metabolism, and oxygen gas as a waste product. They also fix atmospheric nitrogen gas into ammonia as well as nitrite and nitrate ions and therby provide nutrient sources for plants. It’s thought that these amazing organisms paved the way for oxygen-dependent life forms (like us), not only by fixing CO2 and oxygenating the atmosphere, but for actually giving rise to photosynthetic plants themselves.
The chloroplasts of today’s green plants are thought to have derived directly from primordial cyanobacteria themselves via endosymbiosis. In english, that means some cyanobacteria became a non-parasitic, but mutually beneficial, “infection” inside some prokaryotic (with a nucleus) single-celled organisms, and the rest is Darwinism.
Cyanobacteria are already being cultured and harvested by humans for a variety of uses: nutritional supplements, nitrogen fixation in farmland soil as a replacement for chemical fertilizers … there’s a big list.
One of the more promising applications is the nascent biofuel industry. We can get ethanol and oils out of these astounding creatures to use in internal combustion engines, and burn their dried proteins as biomass to turn steam turbines for electrical power generation.
There’s a lot of big money doing research in this area from venture-backed startups to established fossil fuel industry giants. And they’re doing it by mucking around with the genetic code of these organisms.
So these whiz-kid geneticists at Maker Faire wanted to give the common citizen the ability to do their own genetic tinkering in our own kitchens. “Sweeeeeeeeet!” I said. Their equipment looked like the very same things I’d seen in my own biology labs in college, which was the same equipment I’d seen in my father’s own lab growing up.
My father was a research assistant in a pediatric hospital for 25 years before switching careers and becoming a mental health counselor. His graduate training was embryology and that necessarily involved a lot of molecular biology and genetics.
Some months after the Faire, I was in town to visit my folks, and told Dad about what I’d seen out in San Mateo. “Well son, I understand your excitement, it is cool stuff,” he said in the tone of voice that portends a “BUT …. it gives me the creeps.”
He then launched into laying out the case for how putting the power of the genetic code into the hands of amateur scientists could only end badly. From innocent accidents, to wannabe bioterrorists — someone, some day, is going to cook up a lethal critter in their kitchen and create, by directed evolution this time, a small tiny bug with planet-changing capabilities.
No. I’m thinking Andromeda Strain by Crichton, Cat’s Cradle by Vonnegut and Engines of Creation by Eric Drexler.
The ethics of killing unborn children to harvest their stem cells is an important one. The world doesn’t need any more mad scientists on the order of Dr. Mengele either. Genetic Supermen would of course become the elite.
But we already have an elite, and they’re already sucking the life out of the middle class. If you really are looking to plant the fear of God into people to bring people to God, I’ve just handed you a much scarier narrative. Use it wisely.
Some thoughts on the subject, here: http://tofspot.blogspot.com/2011/07/dialogue-concerning-internal-world.html
And a short story on the subject, “Hopeful Monsters,” here:
http://www.amazon.com/Captive-Dreams-Michael-Flynn/dp/1612420591#reader_1612420591
Over all a good post Briggs. Two points strike me:
“Identical twins raised apart often develop different personalities and enjoy different levels of health.” By often, do you mean rarely?
“for those who can afford it, and there will always be echelons”. I wonder how much of modern medicine would remain if this had been a consideration? I guess none.
Galton was a democrat – as were early true believers in the fine science of eugenics – Wilson, FDR, Kennedy, all proclaimed their support.
I’m not, b ut the argument you’ve entered on here is simple enough for a conservative to understand. The choices are:
Option one: lets kill off those who aren’t like us
Option two: lets not kill off anyone we don’t have to.
Since democrats love option one, the implication is that the people they don’t want killed (e.g. serial murderers on death row) are like them.
Umm, QED? . but the point, of course, is that sane people prefer option two.
YOS: I have read the first link in its entirety, bears repeat reading. Most excellent, though I wouldn’t be me if I didn’t have a few quibbles.
I do have a quick meta-argument. [these quickies always get longer than I think they will] It seems that nearly all of Nature’s gifts can be used for either good or evil purposes. It further seems that Nature’s inner workings are … open source … if you will, but it doesn’t come with a technical manual. We do have an operations manual, general guidelines as it were. Actually, we have several such manuals — which don’t fully agree with each other, and none of them are even entirely self-agreeable. Plus, Nature only knows who’s been behind all the various editions and additions/subtractions, nevermind who really wrote them to begin with.
So I wonder out loud if the point of the exercise is to take it upon ourselves to muse and tinker on our own, knowing full well that if we’re not cautious that any given experiment could blow right up in our face. There’s a good chance that the reason we know to Always Add Acid is not because someone thought about which beaker to decant from before doing it. Sometimes we do just have to learn it the Hard Way first.
Scotian:
+1
Paul Murphy:
Oh dear. Well, I’ll spot you Stalin and Pol Pot because I’m in a sporting mood, see your TWW, FDR and JFK with the Crusades. And then raise you one GWB.
And no, Hitler’s not the trump.
Isn’t the most productive game ever, but has its amusements.
There is the option of genetically testing the parents and if there’s a genetic trait you don’t want passed on, don’t make babies.
Sheri: If the Gummint gets in the business of defining deleterious genes it will make the great battle over the thermostat of the planet look like a pro-wrestling match. I’ll go along with you so long as the State keeps its meddling paws out of it.
Consider the following: Down Syndrome, Patau Syndrome, Edwards Syndrome.
These are ordered from least lethal/debilitating to most. (Best to worst prognosis.) They are reliably detected prenatally, with testing becoming routine for mothers around age 30 or over. My understanding is that age of the mother is the major risk determining factor, not so much (if any) known familial history of either parent.
Three questions:
1) What is the contraception/sterilization policy for couples where the woman is nearing age 30 or older?
2) What are the ethics of terminating a pregnancy testing positive for any of these three disorders? Are the ethics applied equally to all three, or do they vary by the relative severities of each one?
3) Should the government provide for routine testing for every pregnancy regardless of maternal age?
The Crusades? Do you mean the historical crusades, or the crusades of myth and legend? Connection with designer babies?
YOS:
The ones of myth and legend; this is just me playing poker. Of course, everyone now expects the Spanish Inquisition to be thrown into the pot.
Sanctity of life. I think that’s what Paul Murphy was driving at when he wrote:
I know you can’t see me, but I was smiling as I wrote the post to which you refer. If you’re not smiling, I’ll understand. I was trying for a little levity.
“Of course, everyone now expects the Spanish Inquisition to be thrown into the pot.”
I’m sorry, I can’t help myself.
No one expects the Spanish Inquisition!!!!!!!!!!!!
http://www.youtube.com/watch?v=7WJXHY2OXGE
MattS: I was hoping someone would catch that. 🙂
Already seeing Leviathan moving to adjust health coverage for indulgent behavior(eating trans fats, smoking, etc.) Wait for cancellation of coverage for indulgent behavior taken to its extreme.
I see you have the gene for Alzheimer’s and your selfish parents ignored the guidance from the Department of Evaluating Citizen Potential and allowed you to live. Sorry, no health coverage this child or access to treatments in the future. To aid “natural” selection, the child will be sterilized as an infant. Its mother took it to term so Leviathan’s doctors will make sure another mother doesn’t make that same mistake and create another taxpayer burden.
re: Brandon Gates
Putting GWB on the list is absurd. He’s going down in history as one of the greats. (if I were 40 years older, I’d shout “mark my words” here, but I’m not so I’m not)
However, the subsequent comment
is more interesting. I used to agree with this, but have since learnt that the history we all learned was written by people with agendas.
It turns out.. .. that the spanish inquisition as most people think they know it never happened. What did happen is that Isabella & Ferdinand were afraid of another islamic invasion and put their own, completely secular, people in charge of the church establishment. Those people then turned the church into a secret police force dedicated to rooting out the terrorists of the time. As Stasi always do, they got a little carried away… but it’s wrong to think of what happened as in any way religiously motivated. It wasn’t.
Someday, when I feel in need of self-flagellation, I’m goiong to have to study the crusades…
@Paul Murphy,
Whoosh!!!!!!!!!!!!!!!!!
The whole Spanish Inquisition reference was an old Monty Python joke. See my reply above and Gate’s subsequent reply to me.
Paul Murphy: I’m of the opinion that subthread you started is absurd. It smacked of the kind of partisan bickering that I feel detracts from any meaningful political debate. Rather than get all angsty about it, I decided to have a little bit ‘o fun. Props to MattS for picking up the Python and playing along. Laugher is the best medicine and all that.
My long view of things is that (a)religious alignment or party identification is a poor determiner of large scale malfeasance. For instance, I could have “spotted” you the Democratic party circa the Iraq invasion for going along with it. The fact is I’m furious with both GWB and congressional Democrats over it. Nor would I necessarily hold the Republican Party or Christianity out as the main factors influencing GWB’s ham-fisted foreign policy. It was is general ham-fisted ideological stance which just so happened to contain some of the least desireable themes of the radical religious right.
Radical elements of a given partisan or religious ideology do not represent the whole; they’re often the loudest and most visible, and therefore have a tendency to taint their more moderate and tolerant bretheren.
In like reasoning, Christianity was not the ill behind either the (real) Crusades or the Inquisition. They were quite obviously motivated by the very same things that start pretty much all wars: greed mixed with xenophobia. By the same token, Pol Pot and Stalin weren’t motivated by atheism to oppress, torture and kill millions of innocent civilians, it was their narcissistic totalitarian personalities which provided the impetus.
And no, Hitler is not the trump. Wrong game anyway. He’s somewhat a wildcard. Like Stalin, he had Christian upbringing, unlike Stalin it’s not clear that he was necessarily a non-theist. He did invoke Christianity in his early rise of power as a way to stoke the anti-Semite sentiment among Germans. It seems to have served as a good catalyst for Hitler’s overall manipulative use of nationalism, which played very well among his countrymen who were still very much humiliated by the Treaty of Versailles.