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Eugenics

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f91f1ec3f20d34989c512b18aeed47caThe Washington Post has an op-ed up right now titled: What’s the difference between genetic engineering and eugenics? I will be frank and state that it’s not the clearest op-ed in my opinion, though to be fair the writer is a generalist, not a science writer. As I quipped on Twitter, the issue with eugenics is simple: the problem is coercion, and the rest is commentary. I understand that the public is wary and skeptical of CRISPR technology and preimplanation genetic diagnosis. The problem is that the public is also suspicious of food which has DNA in it. Genes are not magic, but that is hard to convince the person on the street. Whereof one does not know, thereof one must be suspicious.

I believe for there to be a clear discussion, one needs to take coercion off the table, and abolish its specter by stating that it just isn’t an option. Then we can have a real dialogue that gets beyond the superficiality induced by the shadow of genocide. For example, consider sentences such as the following from the op-ed above “editing genes for frivolous purposes such as increasing intelligence.” There are many technical reasons that it may not be possible to increase intelligence in the near future through genetic engineering. But would increasing one’s intelligence be frivolous? I don’t think so. Whether you agree with this project or not, it is a serious matter, and gets to the heart of what we value as human beings (or at least some of us). But the specter of genocide casts a pall on exploring these nuanced questions, and that is because of the past record of coercion in eugenics.

Erika Check Hayden, a science journalist, has a much more nuanced piece in Nature, Should you edit your children’s genes? Here are some passages that jumped out at me:

In January, Ruthie’s dad Ethan asked her whether she wished that her parents had corrected the gene responsible for her blindness before she was born. Ruthie didn’t hesitate before answering — no. Would she ever consider editing the genes of her own future children to help them to see? Again, Ruthie didn’t blink — no.

The answer made Ethan Weiss, a physician–scientist at the University of California, San Francisco, think. Weiss is well aware of the rapid developments in gene-editing technologies — techniques that could, theoretically, prevent children from being born with deadly disorders or with disabilities such as Ruthie’s. And he believes that if he had had the option to edit blindness out of Ruthie’s genes before she was born, he and his wife would have jumped at the chance. But now he thinks that would have been a mistake: doing so might have erased some of the things that make Ruthie special — her determination, for instance. Last season, when Ruthie had been the worst player on her basketball team, she had decided on her own to improve, and unbeknownst to her parents had been practising at every opportunity. Changing her disability, he suspects, “would have made us and her different in a way that we would have regretted”, he says. “That’s scary.”

Sandy Sufian, a historian of medicine and disability at the University of Illinois, agrees with MacArthur that CRISPR has the potential to become widely adopted, both because of the perception that it would save money that would otherwise be spent caring for disabled people and because of people’s fear of disability. But she questions the idea that eliminating such conditions will necessarily improve human life. Sufian has cystic fibrosis, a disease caused by mutations that render her lung cells more vulnerable to infection and disease. She spends 40 hours a week inhaling medicine to clear her lungs of mucus, exercising and undergoing physical therapy; others have to quit their jobs to make sufficient time for treatments. Yet given the option to edit cystic fibrosis out of her bloodline, Sufian wouldn’t do it. “There are some great things that come from having a genetic illness,” she says.

Garland-Thomson echoes that sentiment; she has one and a half arms and six fingers because of a condition called limb-reduction disorder. She says that she values traits in herself that she may have developed as adaptations to the condition: she is very sociable and wonders if that is because she’s had to learn to work hard to make others feel comfortable around her. “Any kinds of restrictions or limitations have created the opportunity for me to develop work-arounds,” Garland-Thomson says.

450px-FlagellantsThe great thing about taking coercion off the table is that people can have differing opinions. We can differ as to eudaimonia. But, to not put too fine a point on it, I think the world would be fine without cystic fibrosis, even if some great things come of it. We humans are good at making lemonade out of lemons, but Mendelian diseases are definitely low hanging fruit. The people who now have cystic fibrosis are made who they are by their experience of the disease, but if I had the power of the gods I would would abolish cystic fibrosis from their past and their children’s future. You can call me abominable to admit to such a thing, but it’s true. Greatness can come out of adversity, but defeating misery is not a reason to welcome its appearance in our midst. There’s a reason the cult of flagellants isn’t particularly popular.

Yes, having a disease can alter your life. The singer Bobby Darin knew that his life expectancy was short, so he operated in a sort of frenzy when not in poor health because he wanted to accomplish something before he passed on. But with all due respect to Splish Splash, I wouldn’t be sad if Darin had lived a more sedate and relaxed life because the Sword of Damocles wasn’t always hanging over him.

Finally:

There is a common saying among people in the disability-rights community: “Nothing about us without us.” People with disabilities argue that scientists, policymakers and bioethicists should take steps to ensure that the CRISPR debate reflects what is best for patients and their families, to ensure its most humane use now and for future generations.

We can disagree on what is, and isn’t, humane. I think a future with far fewer Mendelian diseases, such as cystic fibrosis, is humane. If some consider me a monster for admitting this, then bring on the monstrosity I say! In the long run I think the we’ll win the argument.

 
• Category: Science • Tags: Eugenics, Genetics 
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Fetus at ~12 weeks

I am going to get back to the eugenics debate at some point, but it is hard to motivate myself. This is due to a combination of complacency and sanguinity. Many of those who use eugenics as a “scare word” or are “very concerned about it” don’t really seem to get past generalities when it comes to the present situation (i.e., there is detailed exploration of past atrocities, and some exploration of rather unrealistic scenarios, such as occurred with the “Chinese eugenic” story, but little concrete engagement with realities such as the high abortion rates for positive tests for Down syndrome). In more crass and intellectually vapid discussions liberals and conservatives tend to use eugenics as a term of selectively useful instrumental rhetoric, a bludgeoning instrument only in the mindless screaming discourse.

Meanwhile, we have advances like the whole genome sequencing of second trimester fetuses. This is still basic science, but in genomics basic science is translated really fast to the consumer market. I’m ~90 percent sure my daughter will have a 10 x whole genome sequence by the end of 2014 (I might even get her parents in on the game for a trio). So, submitted for your interest are two papers on first trimester noninvasive screens for Down syndrome due to aneuploidies (and other syndromes). Non-Invasive First Trimester Blood Test Reliably Detects Down’s Syndrome and Other Genetic Fetal Abnormalities:

An Ultrasound in Obstetrics & Gynecology study by Kypros Nicolaides, MD, of the Harris Birthright Research Centre for Fetal Medicine at King’s College London in England, and his colleagues is the first to prospectively demonstrate the feasibility of routine screening for trisomies 21, 18, and 13 by cfDNA testing. Testing done in 1005 pregnancies at 10 weeks had a lower false positive rate and higher sensitivity for fetal trisomy than the combined test done at 12 weeks. Both cfDNA and combined testing detected all trisomies, but the estimated false-positive rates were 0.1% and 3.4%, respectively.

A second Ultrasound in Obstetrics & Gynecology study by the group, which included pregnancies undergoing screening at three UK hospitals between March 2006 and May 2012, found that effective first-trimester screening for Down’s syndrome could be achieved by cfDNA testing contingent on the results of the combined test done at 11 to 13 weeks. The strategy detected 98% of cases, and invasive testing was needed for confirmation in less than 0.5% of cases.

We did CVS. We’d rather not have to in the future. The key is to move positive tests into the first trimester. No matter the reality that most couples who receive a positive result in early second trimester choose to terminate, when it comes to killing a fetus every week counts. You can see what I mean when you look at how abortions are performed as a function of fetal development. Not only that, if you read the source papers you see that the typical woman who receives these sorts of screens is 35-40 years of age, and in that case with the fertility clock ticking every week is of the essence.

Citations:

  1. Implementation of maternal blood cell-free DNA testing in early screening for aneuploidies.Ultrasound in Obstetrics & Gynecology, 2013; DOI:10.1002/uog.12504
  2. First-trimester contingent screening for trisomy 21 by biomarkers and maternal blood cell-free DNA testing. Ultrasound in Obstetrics & Gynecology, 2013; DOI:10.1002/uog.12511
(Republished from Discover/GNXP by permission of author or representative)
 
• Category: Science • Tags: Abortion, Down Syndrome, Eugenics, Health 
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The Chronicle of Higher Education has a piece out by Nathaniel Comfort, The Eugenic Impulse. I would just like to offer that to a great extent we already live in the second age of eugenics. The high frequency of abortions of fetuses which come back positive for Down syndrome is well known. But it seems possible that we’ll be able to reduce the frequency of many Mendelian diseases as well. Basically those ailments which are due to a major mutation of large effect and high penetrance (i.e., you have the mutation, you have the disease).

A major goal which we’re very far from though is the ability to select for quantitative traits. There are technical hurdles, both tactical and strategic, here. The major issue is that there are simply too many variants for one to be able to select a ‘perfect’ genetic profile. Those who’ve talked to me know my response in this domain: select for low mutational load. High coverage fetal whole genome sequencing would do that. The marketing pitch for this writes itself: imagine you, but bright of mind, and beautiful of face!

(Republished from Discover/GNXP by permission of author or representative)
 
• Category: Science • Tags: Eugenics, Genetics 
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Neuroskeptic has a post up, The Coming Age of Fetal Genomics:

So they don’t. Instead, they buy a $100 test kit, they each provide a small blood sample and send it off to one of the companies offering fetal genome testing. At the testing lab, they can separate out the mother’s DNA from that of the fetus, both of which are present in the mother’s blood. By comparing the fetal genome to the mother’s and father’s, it’s easy to spot de novo mutations. If a certain gene doesn’t match either the mother or the father’s sequence, it’s mutated.

A few days later the results are back. There are several mismatches detected. Most are benign – they’re not predicted to have any biological effects. But there’s one, a deletion of a few thousand bases in a gene involved in brain development. This deletion is predicted to raise the risk of epilepsy and autism from 1% to 10% apiece. The parents now have a decision to make. The mutation is a one off, it’s not inherited. If they conceive again… roll the dice again… and it’ll be gone. Do they terminate?

Like the adverts say, “Some people disagree with this, but we say there’s only one person who really matters: your baby.”


Probably not too surprising to readers of this weblog. Years ago I joked that Armand Leroi was a “demon geneticist” for broaching the topic of neo-eugenics. At this point his article isn’t really timely, it’s almost passé! Recently on Facebook an evangelical Christian friend from high school posted a photo of a child with Down Syndrome, making the case for the value of such a life. We’re beyond thought experiment stage, CVS and some of the non-invasive methods are “online.” If Armand was a dark creature, we live in the age of Gog and Magog already. The media just isn’t reporting it for whatever reason.

But I’m not here to scare you. Rather, there is a positive and ethically uncontroversial method by which we can reduce the expected mutational load of any future fetus for a wide swath of Americans. This applies particularly to people who are the core audience of this weblog. Not only am I going to put a proposition out here, but I considered the cost vs. benefit for myself (ultimately, I decided that it wasn’t worth it for various reasons). Let me go to the section of the post which highlights what I’m getting at:

….new mutations, out of the blue, they can affect any family. A clear family history is no protection. They don’t discriminate by race or lifestyle. It’s just the luck of the draw – except that older parents are at much higher risk, especially older fathers. In the case of our couple, she’s 28 and he’s 32. Perfectly normal for this day and age – but very old in biological terms. Humans evolved to be grandparents by 32, not parents….

Sperm are replicated throughout your life. There’s a hypothesis that it is through the male germline that genetic load tends to creep into the population (or, more positively, mutations which ultimately may be the source of variation which drives evolution). Circumstantial evidence implies the children of older males may have decreased quality of life (e.g., higher rates of cancer). I recently asked a researcher who has looked into the question of genetic load in humans, and he seems to lean toward the proposition that sperm quality does decrease as a linear function beyond one’s early 20s. If you are a forward thinking person I assume you’ll already have anticipated me: massive banking of the sperm of young men may result in greatly reduced later life aggregate morbidity on the social scale.

Obviously some of the same applies to eggs, but that’s a more difficult and expensive procedure. And, the storage conditions have to be optimal. But I don’t see this as an insurmountable engineering problem. You should extend this to pre-implantation genetic diagnosis as well, take the zygote(s) with the lowest mutational load values and implant them. But that would be more controversial, due to the expense and the ethics.

I began thinking of this only a year or two back when I was going about starting a family, relatively late in life. Since I’m already “in the game,” and I can’t go back into the past to get my young sperm, I didn’t do this. And long term storage isn’t available in all locales. But if you are a young man who lives in a large urban area and has a decent disposable income, why not? Your symmetrical children with low mutational load will thank you for it.

(Republished from Discover/GNXP by permission of author or representative)
 
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A comment below clarified my thinking in one particular area: is widespread genetic screening going to result in a reconsidering of the idea of ‘engineering’ society? I realize now that in a comparative scenario this is ridiculous. The majority of healthcare expenditure is near the end of life, not the beginning. In 17 years the last of the Baby Boomers will turn 65. The looming costs are rather straightforward. And it’s not just an issue in the United States, the whole worlds is going gray.

 

How do we handle this sort of sociological challenge? One solution lies in increased economic productivity through innovation. This is great if you can get it. But another was option is obviously something like a milquetoast form of Logan’s Run.* Governor Dick Lamm was reputed to have said “we have a duty to die.” But not to be churlish, I observe that at 77 years of age now Lamm himself continues to be active and full of life (he made the comments when he was 50).

I’ve also been thinking about this issue because of a radio series on learning to live with “early onset” Alzheimer’s. Upon further reflection I realize that I don’t think I would want to “learn to live” with such a disease. Yes, such things are easy to say now. But perhaps it is best that we start to consider these issues as early as possible, both individually, and as a society. At the end of the day many of us would say that the point of living is to live a good life, not to just live.

* The option of allowing in large numbers of immigrants is a short term solution, the source nations for migration are themselves aging.

(Republished from Discover/GNXP by permission of author or representative)
 
• Category: Science • Tags: Bioethics, Eugenics 
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In the comments below Jason says in regards to the connection between eugenics and genocide and the “slippery slope”:

In your current comfortable first world circumstances, you are right the slope is perhaps not that slippery. I hope you are never tested in a less comfortable setting as then I think you might find it can be pretty slippery after all.

A reference to the interlocutor’s status as a citizen of the comfortable First World (which itself is a somewhat archaic term by now I think) seems de rigueur in many arguments. And I think many people will find it plausible that someone in an affluent consumer society would be blind to the “dark side” of eugenics, and how it could lead to genocide. But I think this plausibility is entirely superficial, and collapses upon closer inspection. Rather, it is I believe in “First World” and advanced nations where the likelihood of the ubiquity of eugenics and possible genocide predicated on systematic eugenics is going to be the most probable outcome.


There is a large general issue at the root of this confusion, the implicit progressive “Whiggishness” in our sensibilities, which derives in part from the power of science to advance in a clear fashion. This sensibility has some grounding in our contemporary realities, but we take it too far. History can, and does, move in cycles. In the 18th century the most articulate and crisp racist sensibilities were arguably elucidated by relatively secular forward thinking intellectuals such as Voltaire, David Hume, and Immanuel Kant. This seed of scientific racialism waxed and reached its peaks in the years around 1900, before waning in the 20th century. This complex reality is often not appreciated when we Americans consider the arc of history moving always forward as the arrow. Similarly, because of the Whiggishness of our conception of cultural change many Americans have a hard time wrapping their minds around the fact that between 1837-1841 the the Vice President of the United States, Richard Mentor Johnson, was known to have had common law mixed-race wives, with whom he had daughters who he acknowledged. Johnson was the nominee of the more racially populist party of the time, the Democrats, to boot! This would not have been conceivable in a few generations, when despite the outlawing of slavery the racial boundaries were much more finely and sharply demarcated.

This Whiggish tendency means that when it comes to barbarities “less developed” societies are perceived to be more susceptible to breakdowns in civilization. But that’s just not true. People are regularly surprised that in much of Asia economic development is correlated with sex selective abortions. That’s fine to be surprised, but this seems to be something that’s replicated in both China and India.

So on to the specific point of personal eugenics, it will be societies where there is personal wealth, as well as a demographic transition, where the means of reproduction will become a major public policy and individual choice. These are also the societies where medical costs are far more socialized, whether directly (e.g., through single payer or national health services) or indirectly (e.g., requirements that no one be turned away from the emergency room). When health care is socialized it seems that there is the strong possibility that society will feel that there is an incentive for it to become active in the shaping of the characteristics of the citizenry. In contrast, in underdeveloped societies where health care is not a right and the population pyramid still skews toward youth, finely-grained eugenical sensibilities won’t be necessary, there’ll be a surplus of humanity.

All this is not to say that I think that the “end of history” will be toward some eugenical regulatory state, at least in the medium term. Rather, the necessary preconditions for this sort of society exists in the developed First World, not the less developed Third World.

(Republished from Discover/GNXP by permission of author or representative)
 
• Category: Science • Tags: Eugenics, Futurism, Health 
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Razib Khan
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"I have degrees in biology and biochemistry, a passion for genetics, history, and philosophy, and shrimp is my favorite food. If you want to know more, see the links at http://www.razib.com"