NPR (National Public Radio in the US) recently aired an interview with Victoria Gray, who traveled to a London summit to present her experience with healing via CRISPR from crippling sickle cell. She repeatedly explained that her healing was evidence of how God and science can work together.
GRAY: The life that I once felt like I was only existing in I am now thriving in. I stand here before you today as proof that miracles still happen and that God and science can coexist.
For those who know folks with sickle cell, this seems like a Godsend. It often causes bone and other tissue to lose oxygen, accompanied by crippling pain that feels like a crushing heart attack .It can even cause strokes. This young lady struggled to keep a job and take care of her children.
I found this story both encouraging and challenging. As Rob Stein wrote,
There are still big questions about all this. How many patients will it help? How long will it last? The treatment is complicated and is expected to be really expensive - possibly costing millions of dollars. Will it be available to the patients who need it most, especially in less affluent countries, where sickle cell is most common?
What kinds of ethical dilemmas do you think this poses? Do you think that Christians and people of faith will shy away from this type of technology? How can we allocate money appropriately to not only the high yield, low cost prevention, but also to high cost interventions like this one that nevertheless change lives? Does anyone know of examples in various countries that deal well with these types of questions?
Difficult questions. I think a long view may be needed, in that while such therapies may only be available to those of privilege at first, they will through that eventually become commonplace as the technology grows and become routine. Not a perfect world, but one that we live in. The same thing happens to a lesser extent with new drugs. Human insulin was very expensive at first, and most patients had to stay with porcine derived insulin until now it is pretty much affordable for most.
Of course, the downside for the privileged, is that they are essentially the Guinea pigs for new and expensive treatments that may not pan out. We see that in a way where those with money go for unproven treatments in other countries, only to die poorer and quicker. And situations like Steve Jobs, whose money bought him false treatments until the point where conventional treatment had little chance of working, and questionable aggressive treatment with a liver transplant after developing metastatic disease.
I remember from an ancient history course that this was a complaint in both Rome and Egypt, though there the wealthy had an alternative if they were wealthy enough: just get some of your slaves infected and try remedies on them – or in this case it would be buy some slaves with the affliction and try the remedies on them.
But the Christian morality that saved Rome from itself for a time sort of precludes that today, unless we go the route that some have advocated: paying prisoners serving life sentences to be the guinea pigs.
In the Christian West, the wealthy have been the guinea pigs for centuries because of that change.
I feel like Phil basically summed it up on how I think the technology will pan out. I know a lot of companies are working on developing the ability to do personal treatments for people tailored to their specific genetics. It’s almost completely experimental as far as I know which is solely based off of what I hear and read in various things as side conversations.
I don’t think very many Christians will be against it. At least not when it’s available to someone who’s losing a loved one or dying themselves. I hope that it works out for the woman and other patients.
I feel like she’s using the word miracle in a way I typically do not use it. But that’s normal. Miracle is used for two main things like. Something going great and something going great because of supernatural intervention. I don’t particularly view this as science and faith going hand in hand but merely the byproducts of science. Though I’m sure I’ve read having a hopeful positive outlook gives people a better chance of pulling through something than a negative one. So I’m sure her faith helped keep her positive but that’s typically not what people mean when they say faith and science hand in hand. But what matters is that she seems to be doing well and that’s wonderful.
It does suck that we live in a world where money determines value when it comes to treatment. I always can’t help but think that it’s like starvation and homes. We have more than enough plants on this world to give everyone a nice, small very well built home and enough food that no one has to ever starve, and yet so many do. Ever see the amount of food thrown away from stores because no one bought it and it went bad? Tons. Ever see the amount of food, especially fruits and vegetables, that houses throw away because they bought it when wanting to be healthy and then never eat it and so it goes bad and they toss it? Tons. Even I, who only eat plants and mushrooms and enjoy it, still use to find myself throwing away like 20% of what I bought. It’s why now I only buy 2-3 types of fruits ( not cooking vegetables which are normally fruits as well ). If I buy a 5-6lb bag of apples, oranges, plums and 1-2lb things of grapes, strawberries, cherries , and so on I just never seem to be able to eat it before it goes bad. So now I buy like a bag of apples , a thing of grapes and a thing of blueberries and eat them in a week. Never none going bad typically. Then the next week I’ll get bananas and oranges. The next week I’ll get guavas, cherries and strawberries. It’s the only way I can eat 99% of it before it goes bad.
So I was saying that to say that just with food, I often feel like there is enough technology and medicine to help everyone that needs it. But our world is not set up for socialism to dominate the scene , and if it did I’m sure a whole other set of problems would arise as well, but it is instead centered around capitalism because everyone wants bigger , nicer and faster things.
The big ethical dilemma with gene editing in general is germline alterations. Future generations can’t consent to having their genomes altered. However, the procedure for editing the genes associated with sickle cell anemia are done in the lab outside of the body. This prevents germline alterations and sidesteps the biggest ethical issue associated with gene editing. I think this is a great example of how the technology can be used ethically until humanity figures out what the ethical future of gene editing is going to be.
Other concerns include safety, equity, and the slippery slope. Is this technology going to be available to everyone, or just the rich? Will treatment of serious diseases lead to a slippery slope where we are now enhancing individuals instead of treating a serious disease? CRISPR can also cause off-target changes in the genome, so what are the risks with those?
I have seen a lot of mixed reactions. Some people view their genome as being an essential part of who they are. At the same time, Dualism is still a very prominent worldview in Christianity where the soul is independent of the body, and by extension the genome. There are going to be those who view gene editing as “playing God”, which has been a not uncommon reaction to many new technologies.
The NIH has a short summary of the bioethics surrounding gene editing, if anyone is interested:
I’ll have to check the link above later after work. One thing I’ve wondered about is will crispr be able to be used to eliminate differences like Down syndrome and dwarfism and should it be.
A few times I’ve seen this question arise within discussions on “ resurrected bodies “ and would they still have Down syndrome and Dwarfism and saw some who said they had dwarfism and it’s part of who they are and they don’t want to be tall and others say they want to be normal height and wonder how that will happen and I saw a video once years ago where someone with Down syndrome said there is nothing wrong with them and they will be the same in heaven.
I have no money is this particular race but it’s one of the ethical things I’ve wondered. Saw a video once, no idea of its true, it was some sort of abortion vs forced births ( not trying to debate that here ) where they said that in I think Norway or something, almost all fetuses with Down syndrome was terminated and so there was almost none in that nation.
I read a novel in which it was proposed to unleash a virus that would reduce the height of future offspring by 25%, the idea being that if everyone were smaller the resources humanity would need would be reduced.
Down syndrome, no. Down syndrome is caused by an entire extra chromosome, and that is not something gene editing can fix.
Dwarfism (achondroplasia), potentially yes. This condition is due to a specific mutation in a specific gene, so that is something gene editing could potentially address. Nearly all of the classic Mendelian genetic diseases could be addressed by this technology (e.g. cystic fibrosis, Tay-Sachs, hemophilia).
Before typing it I checked and there showed up as several studies, though I never checked them, that were mentioning gene therapy as a way to potentially eliminate things like DS and that it’s a focus some have.
I did not read any of them. But it seems that this is part of the discussion of using this kind of technology. Even if at the moment it can’t, there are some working towards finding out how.
This is a section on DS.
Down syndrome, also known as trisomy 21, is caused by an error in cell division that leads to an extra chromosome 21 (68). It is a well-known genetic disorder that impairs neurodevelopment in newborns. The extra chromosome 21 causes overexpression of >100 genes that drive brain development or function (69). Several gene editing strategies, including CRISPR, have been applied to eliminate the surplus chromosome (70). For instance, two gRNAs were designed to target repetitive sequences at the long arm of chromosome 21, induce cleavage at multiple sites, and eliminate the whole chromosome. The deletion of an entire chromosome is challenging as it is difficult to efficiently induce multiple DNA cleavages. Although the initial trial of the chromosome-removing strategy was successful in stem cells derived from patients with Down syndrome, the same outcome was not replicable in embryos, probably because chromosomal deletion was lethal to embryonic cells (55). Recently, two alternative strategies were proposed. The suggestions were aimed at inactivating instead of deleting the extra chromosome 21 (71). Guided by sgRNAs, the Cas9 nuclease could home in on and cut off the Down syndrome critical regions in chromosome 21, which harbor the culprit genes that cause Down syndrome and inhibit neuronal development. Alternatively, the enzyme could edit out a non-functional segment within chromosome 21 in exchange for a regulatory DNA construct which contains XIST that inactivates the chromosome (71, 72). With this proposed approach, chromosomal inactivation by XIST which normally occurs at the pluripotent stage could be induced in non-pluripotent neural stem cells and differentiated neurons (73). Both the proposed methods could rescue neurogenesis and improve cognitive performance in Down syndrome patients.