- 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.
I'll be coming back to this later, but here's some questions to start the conversation. Should you put a bandaid on a cut? Should you splint a broken bone? Should you vaccinate yourself and your family against a disease that hasn't been documented in your country in a generation? Should you replace a malfunctioning heart valve?
Should we changes the genes to ensure there are no gay children? Should we change the genes to ensure that nobody has a different mind than the average? Should we change the genes to ensure that everyone matches the fitness, height, and other standards that society typically encourages? Absolutely not. It creates the same negative effect as eugenics. While genes that directly cause massively damaging things like blindness are acceptable to edit out, any further than that is unacceptable to me. Imagine we took someone like Stephen Hawking, "fixed" his genes at birth, and he was now an average 40 year old working a desk job, with a good body, and a good brain. And, yes, these people will live worse lives, be ridiculed, bullied, and disliked as all those weak, atypical, or different end up being. They will live worse lives as indaviduals thanks to our refusal to fix them. Perhaps Hawking is happier with a good body. However, for the good of society, for the health of our nations, families, and so on, we can't all be average, typical, or normal.
I wasn't aware being gay was a problem like Tay-Sachs or (NSFW Warning) Harlequin Icthyosis Schizophrenia runs in families. Feel like passing that one on to your kids, grandkids? Or do you make the choice to remove that danger from their lives before they even exist? I know what changes I would want made in my own genome. Can't speak to anybody else though. People are already allowed to fuck up kids in all sorts of ways, including fetal exposure to all kinds of things. Hell, what your dad was eating, his smoking status, in the months before your parents conceived you determine your propensity towards obesity. Why can't you fuck them up like this too? What makes genes so different, so 'sacred' from all of the other ways parents are allowed to doom their children? Where is it written that genius requires physical suffering and deep social ostracization? I grew up a sick kid. My experience has so deeply affected me that I am actively looking for a doctor to neuter me so that I cannot accidentally pass on my specific brand of fucked up. I would not knowingly inflict what I had to deal with on any other human being. I understand it's a slippery slope argument, but I have chosen to believe that individual human lives are valuable, and valuable enough that illness should be prevented when possible. By your logic we should ban vaccinations because FDR had polio and wouldn't have been as good of a president without it.Should we changes the genes to ensure there are no gay children?
Should we change the genes to ensure that nobody has a different mind than the average?
Should we change the genes to ensure that everyone matches the fitness, height, and other standards that society typically encourages?
The diseases you mention, things that cause imminent death are cases where I do agree that genetic manipulation should be allowed. Things like schizophrenia run in families, yes, but consider the fact that the families with the disease are still alive today, having not been killed off due to one reason or another. I'm positive that in order to get rid of the disease, you have to get rid of the benefits that the genes that cause that disease also lead to. The problem is that genetics is complex, it is something we understand in theory, but rarely do we know the full implication of changing a person's DNA. Making people all big, strong, losing weight fast, and so on, may seem appealing, but there is a good reason that people who don't do those things are still alive, even if we don't know that reason yet. We need to keep that attitude, the idea that all bad things are good, and good things bad, when it comes to human biology and traits. I would never be who I am today if it weren't for my negatives, so to talk about how great it would be if my parents did something to change me as a child is akin to talking about suicide. And I agree that we shouldn't accept parent's doing things like drinking, smoking, or otherwise, if they plan to have kids. Those who do that sort of thing are bad people, no doubt about it. The former is indirect, and often the way people were just acting. The latter is an explicit attempt to equalize, normalize, and generally cleanse humanity of traits that humanity deems negative. Nature, however, has different ideas of negative and positive, and that's the problem. The way people act naturally, the diseases and issues with our genetics, have been around for billions of years, they are a part of our species, and likely have all played some role in helping humanity survive. Human lives only hold a value greater than the lives of any other creature because we a part of a larger system that values us. Without that system, without our ability to be a part of society, we are no better, or more important, than a pig, a cow, or an insect. Physical traits are often linked to genes. Genes often create multiple physical traits, and often being good at one thing requires a sacrifice for another. Hawking is a bad example, because his body and mind are likely effected by different genes, but my point is that, when selecting for good traits, we will also be selecting against great ones. Being greater than others requires being different. Being different implies you will be picked on, bullied, and so on. It's not that being picked on results in genius, but the other way around. Vaccinations are not changing the very genetic code of who we are. Humanity has had the tools with which to change our genetics from the very beginning, in the form of eugenics. We saw how that failed, this will go along the same route.Why can't you fuck them up like this too? What makes genes so different,
I have chosen to believe that individual human lives are valuable, and valuable enough that illness should be prevented when possible.
Where is it written that genius requires physical suffering and deep social ostracization?
By your logic we should ban vaccinations because FDR had polio
I'll address the rest of this with more substance later but this line stuck in my craw and I couldn't even finish the rest of the comment because of it. This is pure deterministic nonsense and you're better than that. there is a good reason that people who don't do those things are still alive, even if we don't know that reason yet.
How about this then:there is likely a good reason that people who don't do those things are still alive, even if we don't know that reason yet. We need to be incredibly careful to fully understand the changes we are making when attempting to get rid of these diseases, and we are nowhere near the level of understanding required in order to safely make them yet, unless in the case where the person literally would die at birth, or be totally incapable of living a normal life.
OK I'm responding to this first. In your very first sentence we have fundamentally changed this discussion. The question this article poses is 'Should You Edit Your Children's Genes?' And by your own admission there are cases where genetic therapy should be used. So the actual question we are facing is 'When should genetic therapy be used?' Which is a very different debate, and a far more nuanced one. And I'm just as positive that the truth of biology is more nuanced than that. Just as no single gene controls hair color or eye color, I highly doubt that a single switch flips causing both life-destroying schizophrenia and whatever benefits there may be. Which leads to the next point. I agree wholeheartedly that genetics is complex, but we have to start somewhere. There's no foreseeable reason why an expensive, labor intensive and time consuming medical procedure would ever become mandatory. I'm a huge pessimist by and large, but if we get to that point, we have bigger issues than everybodies musculature. I couldn't disagree more vehemently. But we've already agreed that the question at hand is "In what cases do you use genetic therapy? " or if you wanted to be cruel about it "In what cases do you NOT use genetic therapy? "Things like schizophrenia run in families, ... ...I'm positive that in order to get rid of the disease, you have to get rid of the benefits that the genes that cause that disease also lead to.
The problem is that genetics is complex... ..... but there is a good reason that people who don't do those things are still alive, even if we don't know that reason yet.
We need to keep that attitude, the idea that all bad things are good, and good things bad, when it comes to human biology and traits.
Firstly, I do not believe the conversation has changed context. Answering "You should sometimes use gene editing" is a valid answer to the original question. I made it clear from my first post that there are specific times gene editing should be used, and that there are many times that it should not. When people answer "yes" to a question like the article, it automatically implies "yes, always", which is not something I am willing to say. That's the thing, a single gene probably controls not only things with Schizophrenia, but also changes areas of the brain to make someone more creative, or to make them more observant. While these genes can be a predictor for schizophrenia, those who do not develop the illness due to some reason, such as environmental, epigenetic, or other factors, can greatly benefit directly from having the genes that cause the disease. This isn't necessarily true, but it's very much a possibility. I don't get where you are coming from when talking about the problems when "an expensive intensive, and time consuming procedure becomes mandatory". I was assuming moral choice, if we should morally choose to edit genes. As for mandating or not mandating it, people should always be free to choose, as individuals, what to do.I highly doubt that a single switch flips causing both life-destroying schizophrenia and whatever benefits there may be.
Ok that's a fair point, and one that I agree with. I think we also both would agree with the statement 'You should sometimes NOT use gene editing' without further qualifier. Here's the issue as I see it. There is a population of people, a LARGE population of people that are opposed to ANY AND ALL modifications to the human genome. This same population is also largely ignorant of the realities of genetic drift/flow and natural selection causing genomic change. Those people are unquestionably wrong. You and I both agree that there are cases in which genetic modification is the morally correct thing for a parent to pursue (Tay-Sachs, HTI, things like that) and that there are cases in which it is morally questionable to pursue. (Changing someones sexual orientation, as an example) Can we have this debate again once we have gotten rid of Tay-Sachs, HTI, and a few other diseases?Answering "You should sometimes use gene editing" is a valid answer to the original question.
The problem is that "getting rid" of diseases like this may well have consequences down the line, ones we do not understand, and will not be aware of until they occur. The only way I would support the "eradication" of these diseases is if that happened naturally through editing the genes only when it is known for sure that the child is going to have it, not as a preemptive measure to end some people's genetic lines because it has a higher chance of that disease occurring.Can we have this debate again once we have gotten rid of Tay-Sachs, HTI, and a few other diseases?
Why is it impossible for you to conceive of the possibility that there are some variations in the human code that are purely bugs, and which have no latent feature? I totally concede that we need to tread carefully, but we still need to take some steps.
I will be the first in line when they start rolling out cybernetic augmentation, and instead of saving with retirement in mind, I save for when I will be able to clone my body, improve it with genetic augmentation, and replace my organic mind with a digital counterpart. I'm pretty futurist like that. So, for me, this is a no-brainer. If my son had down's syndrome in the womb, I would want to fix it. If my son had albinism and blindness in the womb, I would want it fixed. Asking a 10 year old if they want to change something about themselves is the dumbest metric for ethically validating a science I can think of. They think the entire world is full of possibility and that unicorns just haven't been photographed in a while.
Maybe I'm just heartless, but it feels like sentimentality is the main justification here, and for that reason I don't think it should be relevant to the titular question. Some might argue that sentiment is justification enough, but I don't think it's a good way to decide the overall ethics of editing genes through CRISPR. Sure, it tells us something about Ruthie and her parents, but then again they're accustomed to their lifestyle. The option of changing the status quo is different from providing people the option to avoid a difficult life. Ultimately, the question on whether or not you should edit your child's genes needs to be a subjective one (unless someone can make a case for compulsive gene editing for certain defects, which I can't imagine). As the article points out, many people don't consider their condition to be a disease. I feel like this falls under the purview of my previous paragraph, but the article also makes the point that diversity can enrich people's lives, and perhaps we would lose that enrichment if we edited out disabilities. It's almost impossible to measure the impact of diversity against the suffering people experience when diagnosed with a debilitating illness, however I find myself siding with those who would like to eliminate suffering, even if that suffering provides a social function. And that's their decision. Personally, I have genetic histories of heart disease, alcoholism, depression, schizophrenia, and a pastiche of other things that I'm not currently suffering from. If I could take a treatment to eliminate these traits from my bloodline, I would do it in a heartbeat so that none of my descendants would have to suffer the way some of my family members have....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.”
Even among people who already have life-threatening conditions, many choose not to interfere with the way the genetic cards are dealt.
I highly doubt that gene editing will ever be compulsive, but it will be interesting what society decides on whether it is ethical to edit an embryo's genome before it is birthed and given any say in the outcomes. I'm predicting that the answer to that will depend on the disease, starting with "yes" for the most drastic genetic disorders for which there is no other option (screening, IVF, etc) for the parents. Slowly that may be expanded to more grey area cases (Severe schizophrenia, retardation, neurodegeneration), but there will always be pushback against genetics involving identity (race, depression, autism spectra, etc). At the end of the day, Ruthie with to maintain her condition and make the most of her life, and that is most certainly her choice, but I would be surprised if changing that would be illegal, versus just a choice people may or may not make (analogous to aborting fetuses with Down's syndrome). And of course there may be families who opt for "genetically superior" babies (hair / eye color, height, athletic ability, etc). But at the present, most of these are poorly understood at a genetic level and I highly doubt the FDA or any other government agency would accept the accompanying risk that comes with gene editing. So that would leave the black market for those parents, and as one scientist in my lab put it: how much does the average person trust an unlicensed Brazilian doctor to cure their cancer?Ultimately, the question on whether or not you should edit your child's genes needs to be a subjective one (unless someone can make a case for compulsive gene editing for certain defects, which I can't imagine).
I wouldn't edit my own child's genes because I would rather the kinks get worked out on other people's children. There's always kinks to be worked out. Having said that I might think differently if there was actually something wrong with me that had a high chance of affecting my children.
It would be cooler if it required the parents to edit theirs first. like how cops have to get tazed to carry a tazer