Retrospectacle: A Neuroscience Blog

I attended a seminar on gene therapy not long ago, and while I never talked much about it at the time, something stuck in my mind as someone interested in the field: is gene therapy a soft form of eugenics? Gene therapy, as referred to by most medical researchers or ethicists would likely be construed as a good thing, a positive thing meant to heal and help a person’s suffering. Eugenics, on the other hand, is widely maligned as negative–to artificially produce or design offspring which fit certain criteria. If gene therapy *could* be construed as eugenics, and perhaps it can’t, should we care? Is there any difference between repairing or removing a disability, as opposed to preventing one genetically?

I got into an argument very similar to this.

My position was along the lines of, repairing or removing a disability (lets say, leukemia for example) is a way to alleviate suffering that is already occurring rather than “potential suffering” or perceived aesthetic flaws. In gene therapy, the individual (rather than a third party be it parent or government) is allowed the freedom and prerogative of deciding what is an intolerable flaw. This is already afforded to of-age people who perceive some physical defect. Whether real or imagined, they can traipse down to the plastic surgeon and have their nose trimmed or their boobed inflated. Yet there might be some moral impediment to the eradication of their leukemia? I obviously don’t think so.

On the other hand, under the policies and beliefs of eugenics, a higher authority was placed in charge of making the decisions which would affect the genes of individuals. This removes the autonomy of the individual, or at the very least creates conflict between the individual and the autonomy figure. It would be easy to argue that this situation in America could be perceived as equally immoral, if not more so, than gene therapy.

There also seems to be a very real ethical difference between deliberatly manipulating an embryo’s genes and *failing* to take the necessary measures to ensure that child is born free of defect. What I mean is, would it be considered wrong to, say, decline to take folic acid during pregnancy even though it has been shown to drastically reduce birth defects? Does it make a difference whether the defect that could be prevented was myopia or cystic fibrosis?

Just some things to think on….

Comments

  1. #1 Left_Wing_Fox
    July 20, 2007

    Eugenics was flawed top to bottom. It was based on a misunderstanding of Darwin’s “Survival of the fittest”; believing that traits could be objectively superior or inferior, instead of relatively fit based on environmental conditions. It was also subject to racist and classist assumptions in lieu of scientific understanding, and used eugenics to help justify these beliefs. As a result Eugenics was always more psudoscience than science, and attracted many other psudoscientific and non-scientific beliefs like phrenology and occult philosophy.

    The result was a justification and acceleration of racist and classist policies that already existed, and even more exploitive coerced and violent acts against groups of people already on the margins of society (Blacks, Jews, Gypsies, Homosexuals, the poor and the infirm).

    While I do think gene therapy is the next step in treating the symptoms of genetic disease, my major concern is that we won;t know where to stop. While gene therapy of cystic fibrosis or hemophilia would be universally applauded, the spectrum of potential “cures” might include sickle-cell anemia, obesity, male pattern baldness, or even possibly homosexuality. There’s also the economic approaches to treatment; the movie GATTACA looks at the implications of both the economic refusal of insurance for those born with potentially existing conditions, and the resulting classism between those genetically selected for superior health and those born “naturally”.

    The line will be drawn based on popular understanding of science and the societal preconceptions of both the public and those in office. That alone makes me wary of preventative genetic engineering, as opposed to post-hoc gene therepy for the time being.

  2. #2 yukon slim
    July 20, 2007

    In addition to the differences that you’ve mentioned, I would add that most gene therapies (currently) don’t modify germ cells. Having said that, it should be possible to transfer genes into someone’s gametes, so it’s a debate we (as a society) should have. I don’t know that there’s a good way to increase the friction on such a slippery slope.

  3. #3 bob koepp
    July 20, 2007

    Before condemning all eugenics (top to bottom), it would be a good idea to note the difference between positive and negative eugenics. The former seeks to create a new and improved humanity, while the latter seeks to minimize the incidence of heritable diseases. It would also be a good idea to note the difference between voluntary and coercive eugenics. In the early part of the last century, before Fascists entered the picture and gave eugenics (top to bottom) a bad name, quite a few progressives actively promoted voluntary eugenics. Their numbers included the likes of R.A. Fisher and H.J. Muller, who can hardly be accused of misunderstanding Darwin.

  4. #4 Shelley Batts
    July 20, 2007

    A good point Bob. One example of voluntary eugenics would be certain matchmaking services that take into account the patron’s status as carrier for some disease (ie, Tay Sachs among some populations of Jews). I think most people, especially upon reading the details of Tay Sachs would think this a noble idea.

  5. #5 Spaulding
    July 20, 2007

    It’s also very important to distinguish between the concept of eugenics, which still draws lively debate, and various historical Eugenics Movements, which have pretty much been universally reprehensible. Realistically, the concept of eugenics is much bigger than any of the historic atrocities committed in its name.

    Courtship is a form of eugenics.

    Merit-based employment, promotion, and salary are forms of eugenics.

    Merit-based or money-based (see above) education is a form of eugenics.

    Slums and gated communities are forms of eugenics.

    Law enforcement is a form of eugenics.

    The list continues indefinitely. Any reward or penalty based not just on ethnic identity, but rather based on ANY valued or despised heritable trait constitutes a eugenic act by changing the recipient’s survival odds.

    Our culture effectively agrees that income, employment, housing, education, marriage, police interaction, etc., should be merit-based (and therefore tied to a range of often heritable traits) rather than random (or equal, where possible). At the same time, there is vocal insistance that random reproduction between two partners is preferable to controlled or merit-based reproduction between those same partners. These attitudes are inconsistant, and the biodiversity argument justifies this attitude only in the smallest degree.

    The record of abuse against individuals and communities by governments in the name of eugenics, often as thinly veiled racism, is politically cautionary. But when one suggests that this record advances an argument that random events are superior to intentional, merit-based selection, it’s a big non-sequitur.

    So yeah, let’s lose that Tay Sachs gene, whether through conscientious mate choice, embryo screening, or transgenics. It’s just another version of parents trying to provide good lives for their children.

  6. #6 Kagehi
    July 20, 2007

    Actually, I don’t think the “biodiversity” argument justifies it **at all**. From a purely practical standpoint, flawed genes occur due to two factors, a) they don’t effect the individual negatively enough to matter much in 90% of cases, while perhaps providing some benefit, like sickle cell, or b) they exist because, as one recent study on deer determined, the traits needed for a female of a species are not *necessarily* optimal for a male of the same species. Modern medicine hasn’t so much defended biodiversity in humans as it has exacerbated the duplication and passing on of traits that would, in a less controlled environment, where heart surgery on children wouldn’t happen, medications to treat problems arising from genetic conditions didn’t exist, etc., the flawed genes would appear, prove non-viable, then vanish, only to resurface later as a random glitch again. In other words, you can’t get rid of 100% of all glitches, even if pure natural selection is going on, and you don’t have a means to save people *with* those glitches, but even in such a pure environment, its not possible to optimize to get rid of segments of DNA that are prone to the errors, without optimizing the species into extinction in the process.

    The problem with people equating a form of Eugenics from the past insane versions, with those of one predicated on, “This flaw would not be survivable in a less controlled environment”, is that you end up with a level of biodiversity that is actually detrimental to the species, instead of helping it. Its like if you decided to kill off every species of goat, except the fainting ones, then released those in the wild. How long do you think that there would still be goats? Well, OK, not *that* extreme, but I think you see my point. If every human on the planet reaches a point where they all carry several hundred recessives, and the only *solution* we allow ourselves is to use surgery and other medical techniques to correct the “symptoms”, and not the causes, then we damn well better hope we never find ourselves back living in caves, because there won’t be anyone left able to produce viable offspring, without medical intervention at some point in the process. That is just stupid, though again, a bit exaggerated.

    The real issue isn’t if their is something inherently bad with *any* concept of eugenics, the problem is if we just arbitrarily define things as not useful, and modify them out, without paying attention to “what they do” first. That is a problem. If we know that X genetic flaw has no benefits, or so drastically outweigh the tiny benefit provided, it might be a good idea to develop something to get rid of it. Its no more likely for some disease to appear that can only be survived by people *with* that otherwise dangerous flaw, than for some other disease to crop up that no one is resistant to. Keeping it may not be worth the theoretical benefit it “might” have if some obscure communicable disease with the right genetic structure reappears.

    The problem though is that, for now, the issue is probably mute anyway. We have no way to be 100% sure the new gene will insert in the *right* place, no way to necessarily reliably delete the bad one, and what methods are used on existing conditions in adults, etc., still have the same risks, in that bad insertions can have worse results than not inserting a corrected gene into the cells in the first place.

    In any case, its going to be about what we know, what the intent is when we decide which things are flaws and what are not, and if the lesser problems are voluntary or forced. Otherwise, as someone else said, we practice variations on it all the time, on a social level, and even, one could argue, on some crude genetic level, with mate selection, so claiming its the idea that’s bad, and not its past implementations, is just absurd. Though, not as absurd as the BS arguments from those people who think that saving the life of a child who wouldn’t survive in more primitive cultures/conditions, *betters* our species genetically somehow, but that saving them, by fixing the defect in the first place, is *wrong*. That’s just imho, bloody stupid and insane, if you know a damn thing about genetics, and are not so solely focused on the value of the child that you can’t see past that issue. We could, presumably, do both at some point. Why do the worst of the two options, by saving their life (good), but also passing on genes that would otherwise fail to get passed to the next generation at all (obviously stupid)? That thinking just doesn’t make sense to me, no matter how much I might feel for the child in question.

    Then again, for the kinds of people who get fanatical over such issues, logic is not often their strongest skill.

  7. #7 Spaulding
    July 20, 2007

    Agreed.

    The biodiversity card only makes sense in the context of a slippery-slope argument that cautions against uniform and widespread transgenic optimization, rather than justelimination of simple genetic diseases. If humans became as uniform as commercial North American maize, we’d have a biodiversity problem. Realistically, I don’t see that scenario happening, regardless of real-world technological limitations.

    The problem though is that, for now, the issue is probably mute anyway. We have no way to be 100% sure the new gene will insert in the *right* place, no way to necessarily reliably delete the bad one, and what methods are used on existing conditions in adults, etc., still have the same risks, in that bad insertions can have worse results than not inserting a corrected gene into the cells in the first place.

    We’re one technology away from this being a relevant issue, and further understanding of our genome (and non-human genomes!) will continue to raise the stakes. When that technology hits, I want our culture to be ready to embrace it intelligently.

    Numerous researchers have been working with bacteriophage integrase systems to allow non-random gene insertion. Maybe this will prove to be the technology that makes low-payload transgenics safe and practical. Or maybe we’ll have to wait several more years for something else.

    Also, remember that deleting a faulty gene wouldn’t usually be necessary – adding an extra functional copy somewhere allows production of whatever missing protein. But this wouldn’t be as optimal from a pro-eugenics angle.

  8. #8 RPM
    July 23, 2007

    Another flaw of previous eugenics movements — one that I don’t think has been mentioned in this thread — is that it assumes that selective breeding can remove recessive deleterious mutations. The problem with this logic is that, without screening a every potential mating individual, those recessive deleterious mutations will always segregate at a low frequencies in a population.

  9. #9 tombo
    July 23, 2007

    and also what of the potential long-term benefits, thou none come to mind, of the variations created thru negative short-term impacts. what i mean is, say farther down the road some illness can actually be perceived and lived as a benefit, and thereby becomes more “fit” leading to the introduction of a new species, in whatever capacity.
    claiming our truth, and exposing it by slow or fast eradication of certain genes is closing on that variable which stills us to this suffering now. the underlying question remains motive, and who truly has a distance of perception as great as the natural world, whom has none of this done actively,.

  10. #10 Stephen Uitti
    July 24, 2007

    If you are talking about screening out a trait, be it Down’s or brown eyes, but you still bring something to term, it’s still your kid.

    If you are talking about changing genes, to make the kid smarter, or have pink hair, then, is it really your kid? How do you feel about adoption?

    I’ve demonstrated that i have no problem with adoption. It would be interesting to rerun my life with various genetic alteration options available, just to see what i’d do. I suspect i’d go with “better is better”.

    To some extent, it’s only going to be half your kid anyway. It’s half your partner’s, too, unless it’s a clone.

    Let’s say you really want to breed the superior human. You pick some trait you want – say fast growing fingernails. You test the breeding population, and pair up a number with faster growing fingernails. After just a few generations, you should be able to get superfast fingernail growth. The only trouble is you have to wait so long.

    But we’ve worked really hard, and have bred anti-biotic resistant TB. I’m not saying it was a good idea.

    It will probably come out as a fashion statement. Like it did with dogs.

  11. #11 mike
    January 21, 2011

    After all is said and done. it is the eugenic principles that i see come to play in the big coorperates of the world.

    Diseases on a whole only come into being, due to a weakind state of the immune system. which for me begs this question.

    If man can create viruses which is evident in gene therapy, would it be to far reaching to suspect that man could design viruses for their own purposes and persuits? in the grounds of eugenics and population control I suppose this would be an effective tool?

    any replys welcomed

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