Genome Editing with CRISPR, Part III
Part I
Part II
Part IV
[Let me make this very clear: I am being very pessimistic here in some of the things I say, especially regarding some hypotheticals. There might be some people who would disagree with me about how those hypotheticals might play out. While what I say about them does reflect my actual sentiments about these issues, I really do hope that I am wrong.]
So, what do I mean when I say this whole issue is an issue for the privileged of the Westernized world?
Those who are not part of the Westernized world, or are far enough out on the periphery between Westernized and not, since the boundary spans a hazy territory, don't get to take part in the discussion and the debate over CRISPR. That is to say, they don't have a voice in the discussion. (Just to get it out of the way: Yes, there are several millions of citizens of the Westernized world who also don't get to weigh in on the discussion. And I don't think they should. Much like in matters of auto mechanics, aeronautics, and heart surgery, these discussions ought to be left to the relevant experts and the legislators to deal with, not Joe Schmoe off the street. So in talking about those peoples of the non-Westernized world not having a voice in the discussion, it's their relevant experts and legislators that we need to be considering.)
This matters because so many of those peoples and nations face some very different problems than we in the Westernized world face. But if some of those problems could potentially be mitigated or solved with the help of CRISPR technology being used in very early human embryos, then it would seem to be wrong to prohibit that. (I will be a little more specific about this further below, and then in Part IV as well.)
Before continuing on this point, I need to bring up the actual issue that is being currently discussed amongst scientists and in the media since March/April this year. Because it's important to understand that "designer babies" are not what other scientists are worried about. (For the most part, but I'll get to that.) Several scientists have openly stated and argued that CRISPR should not be used on human embryos. Some of them claim it should never be used on human embryos, while others are willing to consider a potential future in which we might be able to, but for the time being, we ought not to. (Of course, saying you are open to a possible future in which it might be okay is one thing; but actually taking the next step sometime in the future to go ahead and allow it is quite another thing.) I will get to some of their reasons below.
This is all in response to a publication in April of the work of a group of scientists (in China) who had used CRISPR on human embryos.
No, China is not trying to genetically engineer their babies.
The embryos used were never even viable to begin with: they were initially created for reproductive purposes using IVF; but they were abnormal (tripronuclei) and could not have developed properly. So they were to be discarded anyway. Non-viable embryos from IVF are either destroyed or donated for research.
Viable embryos are sometimes donated to research, too. IVF produces only a handful of viable embryos - I will guess that the average is probably around seven or eight? - so if there are embryos left over, it's up to the couple what happens to them, and one option is to donate to research. (Implantation does not always lead to successful pregnancy; they may end up having to perform two or more implantations. So when I say, "if there are embryos left over", I mean, after successful pregnancy.) When viable embryos obtained from IVF are donated to research, this often renders them non-viable, because - and this depends on the research being done - they will be allowed to develop in a culture past the point at which they would need to be transplanted into a woman's uterus in order to remain viable, that is, in order to develop and grow into an actual fetus. An embryo (in culture) is only viable for up to six days, at most, after fertilization; it would have to be frozen (cryopreservation) to stop development in order for it to remain viable.
Not all human embryos used in scientific research are donated: some are created in the laboratory specifically for research. But just so there is no misunderstanding: in the specific research cited above, i.e., what everyone is reacting to lately, none of the embryos used were created in the lab for the research; all of them were donated from IVF because they were non-viable.
I'll say a little more about their research later. So let me continue the discussion on why it seems wrong to prohibit the use of CRISPR in human embryos.
Now, technically speaking, prohibition doesn't necessarily mean making it illegal. Furthermore, we don't have any control over what other countries decide to do regarding the issue. However, if we imagine that this use of CRISPR is socially unacceptable and shunned amongst scientists in the Westernized world, that would greatly impact all of Africa, for example, even if every single African nation sanctioned this use of CRISPR in their own countries. Which would basically mean, African nations and their scientists would be on their own if they wanted to do research using CRISPR on human embryos.
I'm going to go into some details and specifics here, and while a lot of it may seem obvious, there is good reason to bring up such details and specifics: they are the kinds of things that we in the Westernized world can all too easily forget about, because they are the kinds of things that we are so used to taking for granted. Furthermore, I also want to get it across just how much there is to think about and take into consideration in discussions like this. It's very easy for people to have tunnel vision on these kinds of issues.
To begin with, it is an unfortunate fact that there is still a great disparity between African countries and Westernized countries in available resources, especially for the kinds of resources needed for scientific research that is particularly technology dependent. Cellular and molecular biological research is heavily dependent on technologically advanced equipment and machines of various kinds, computers with certain capabilities, plus tons of supplies and materials regularly used in stock and on hand. That means it also requires specific buildings and facilities specialized for such biological research, and very large amounts of both electricity and water reliably consistently available. Don't forget, such equipment, machines, and computers need regular maintenance and service, and thus need specialized expert technicians for troubleshooting and repairs. And don't forget that buildings themselves need regular maintenance, especially when they have such specialized facilities. Things like the electrical system, the A/C system, and plumbing: it becomes really important to keep these things in check for such facilities. Not to mention the regular cleaning. Biological research also requires proper disposal of biological and hazardous waste, including hazardous chemicals. It also requires the capability to receive (and send) a lot of shipments; but you have to appreciate the sophistication of the infrastructure that's needed for the kinds of shipments biological research laboratories need. Shipments have to be on time; and the option for overnight delivery is highly preferred (possibly necessary). You need the capability for refrigerated shipping, which requires special trucks. You need the capability for shipping of hazardous materials of various kinds, some of which might also require special trucks; but most importantly, it requires the means and capabilities for immediately dealing with an accident or spill. Furthermore, generally speaking, safety issues and concerns require all sorts of codes and regulations, which then require inspections, and probably special kinds of insurance.
It's very expensive research.
It would seem wrong to leave African nations and scientists on their own with very few such facilities while we have plenty here in the Westernized nations, but would grant no use of them to anyone who wanted to do CRISPR research with human embryos because we decided to prohibit it.
You might think, perhaps we would make an exception if the scientists wanting to do it could show that it would allow them to deal with or find a solution to some sufficiently horrible problem that many Africans face. (We always seem to be asking blacks to prove themselves before we're willing to consider them and their needs as equals with us and our own… Then again, not so equal, since it's got to be pretty bad for them before we give in…)
But this would surely be unfair: considering how new the territory is, we could not reasonably expect anyone to have solid hypotheses to start from; research into a mostly unknown territory has to begin with a whole lot of questions and exploring for the sake of just finding out what's there.
Now imagine that some African nations and their scientists (and anyone else who would have to play a role, obviously) were able to build the facilities needed for the research, and take care of all the things that need to be taken care of for such research to take place. And the facilities are just as good as anything we have, and their scientists are just as good as anyone we have; in other words, there is no good reason to doubt the quality of their work.
What would happen when they want to begin publishing their findings? It is extremely likely that no respected scientific journals would publish their work. Because the "respected" journals are pretty much all based in Western countries. And even if there are some respected journals based in other countries, they still very likely wouldn't publish the work because the Westernized world would have made CRISPR research on human embryos taboo, and the West pretty much has a monopoly on scientific authority.
But let's imagine they do find a journal willing to publish. If it were a relatively unknown journal, it may never even be noticed by much of the scientific community; but even if it were, depending on who and where they are, they may very well be dismissive of the work, because it wasn't published in a recognizably "credible enough" source. It would be very unlikely that a journal based in a Western country would be willing to publish the work, because of the culture amongst Western scientific journals (I mean, the editors), that journals are concerned about their reputation, and thus would more than likely not publish anything based on something that is considered taboo in the scientific community. (The paper that got everyone riled up over CRISPR back in April was actually rejected by both Nature and Science because of their worries about potential ethical concerns.) But even if they were to find a recognizably credible Western-based journal willing to take the risk, the work would undoubtedly be attacked left and right by the majority of the scientific community, who would find every reason possible to discredit and dismiss the work. And have no trouble imagining that they would find ways to discredit and dismiss it that would be really just be based on the work having come out of Africa, that that alone would somehow give reason not to trust it. In the very least, the reaction and attacks would probably focus so much on the ethical aspects that the actual scientific work and findings would get lost in the discussion.
That, of course, gives a worst case scenario. But it would not even have to be that bad in order to basically cause problems for the scientists doing the research, and potentially cut short the research. We already know how much politics and public affairs can influence scientific practice and research. Enough bad publicity (and perhaps misinformation) could influence the local government to shut down the research and pass legislation to bar further research; or influence whoever is paying the bill for the research.
I said above that one reason why non-Westernized nations and people ought to be part of this whole global conversation because they face some very different problems from those that we do. But we certainly cannot be trusted to take their problems into consideration without their input, without their being an active part of the conversation.
And I have to say, I feel as though anything even remotely close to "designer babies" objections or concerns is something of an insult to Africans and only speaks to our privilege: I feel confident any scientists (and doctors) in Africa who might favorably consider research using CRISPR on human embryos have far more important and dire concerns than frivolous things like parents wanting to make their children more attractive, more athletic, or whatever. You know, things like malaria and HIV. I would say another possible issue of concern in Africa is albinism: aside from the obvious health risks, albinos in some parts of Africa face horrible discrimination and treatment, including being murdered. Yes, really, and for no other reason than being albino. I could easily imagine an albino in Africa saying that s/he would wish the genetic mutation to be eradicated so that no one else would ever have to suffer what s/he has gone through. And I would not doubt that some albinos have been murdered by their own parent(s) or other family member(s) - or even given over to murderers by parents or other family members. Now, this may seem paradoxical, but I could also imagine that the ability to edit human genomes to correct the mutation for albinism would bring education to people about what albinism actually is, and such education could eventually eradicate the discrimination. (Because genuine understanding is what stops hatred and discrimination and mistreatment.)
Here's the relevant thing to know about HIV in the context of this discussion: there is a small percentage of the human population who carry a specific allele, i.e., a specific genetic variant - call it a specific genetic mutation if you like - that makes them immune to HIV. Yes, immune. Now considering how much of a serious problem HIV still is in Africa, wouldn't it be wonderful to, sometime in the future, be able to give a whole lot of new babies that immunity?
Then, of course, there's the malarial immunity of being heterozygous for the sickle cell gene.
And all in all, because access to and cost of healthcare is such a serious problem throughout Africa, both at the levels of the individual and the government, being able to prevent certain diseases and illnesses could be one of the greatest benefits to so many Africans.
But we have to back up a bit, because, if that is even possible, it is certainly a long way off into the future; we'd have a lot of work to do before we could get there.
However, since I'm trying not to make these entries too long, I'll end this one here and pick up the discussion in Part IV.
Part II
Part IV
[Let me make this very clear: I am being very pessimistic here in some of the things I say, especially regarding some hypotheticals. There might be some people who would disagree with me about how those hypotheticals might play out. While what I say about them does reflect my actual sentiments about these issues, I really do hope that I am wrong.]
So, what do I mean when I say this whole issue is an issue for the privileged of the Westernized world?
Those who are not part of the Westernized world, or are far enough out on the periphery between Westernized and not, since the boundary spans a hazy territory, don't get to take part in the discussion and the debate over CRISPR. That is to say, they don't have a voice in the discussion. (Just to get it out of the way: Yes, there are several millions of citizens of the Westernized world who also don't get to weigh in on the discussion. And I don't think they should. Much like in matters of auto mechanics, aeronautics, and heart surgery, these discussions ought to be left to the relevant experts and the legislators to deal with, not Joe Schmoe off the street. So in talking about those peoples of the non-Westernized world not having a voice in the discussion, it's their relevant experts and legislators that we need to be considering.)
This matters because so many of those peoples and nations face some very different problems than we in the Westernized world face. But if some of those problems could potentially be mitigated or solved with the help of CRISPR technology being used in very early human embryos, then it would seem to be wrong to prohibit that. (I will be a little more specific about this further below, and then in Part IV as well.)
Before continuing on this point, I need to bring up the actual issue that is being currently discussed amongst scientists and in the media since March/April this year. Because it's important to understand that "designer babies" are not what other scientists are worried about. (For the most part, but I'll get to that.) Several scientists have openly stated and argued that CRISPR should not be used on human embryos. Some of them claim it should never be used on human embryos, while others are willing to consider a potential future in which we might be able to, but for the time being, we ought not to. (Of course, saying you are open to a possible future in which it might be okay is one thing; but actually taking the next step sometime in the future to go ahead and allow it is quite another thing.) I will get to some of their reasons below.
This is all in response to a publication in April of the work of a group of scientists (in China) who had used CRISPR on human embryos.
No, China is not trying to genetically engineer their babies.
The embryos used were never even viable to begin with: they were initially created for reproductive purposes using IVF; but they were abnormal (tripronuclei) and could not have developed properly. So they were to be discarded anyway. Non-viable embryos from IVF are either destroyed or donated for research.
Viable embryos are sometimes donated to research, too. IVF produces only a handful of viable embryos - I will guess that the average is probably around seven or eight? - so if there are embryos left over, it's up to the couple what happens to them, and one option is to donate to research. (Implantation does not always lead to successful pregnancy; they may end up having to perform two or more implantations. So when I say, "if there are embryos left over", I mean, after successful pregnancy.) When viable embryos obtained from IVF are donated to research, this often renders them non-viable, because - and this depends on the research being done - they will be allowed to develop in a culture past the point at which they would need to be transplanted into a woman's uterus in order to remain viable, that is, in order to develop and grow into an actual fetus. An embryo (in culture) is only viable for up to six days, at most, after fertilization; it would have to be frozen (cryopreservation) to stop development in order for it to remain viable.
Not all human embryos used in scientific research are donated: some are created in the laboratory specifically for research. But just so there is no misunderstanding: in the specific research cited above, i.e., what everyone is reacting to lately, none of the embryos used were created in the lab for the research; all of them were donated from IVF because they were non-viable.
I'll say a little more about their research later. So let me continue the discussion on why it seems wrong to prohibit the use of CRISPR in human embryos.
Now, technically speaking, prohibition doesn't necessarily mean making it illegal. Furthermore, we don't have any control over what other countries decide to do regarding the issue. However, if we imagine that this use of CRISPR is socially unacceptable and shunned amongst scientists in the Westernized world, that would greatly impact all of Africa, for example, even if every single African nation sanctioned this use of CRISPR in their own countries. Which would basically mean, African nations and their scientists would be on their own if they wanted to do research using CRISPR on human embryos.
I'm going to go into some details and specifics here, and while a lot of it may seem obvious, there is good reason to bring up such details and specifics: they are the kinds of things that we in the Westernized world can all too easily forget about, because they are the kinds of things that we are so used to taking for granted. Furthermore, I also want to get it across just how much there is to think about and take into consideration in discussions like this. It's very easy for people to have tunnel vision on these kinds of issues.
To begin with, it is an unfortunate fact that there is still a great disparity between African countries and Westernized countries in available resources, especially for the kinds of resources needed for scientific research that is particularly technology dependent. Cellular and molecular biological research is heavily dependent on technologically advanced equipment and machines of various kinds, computers with certain capabilities, plus tons of supplies and materials regularly used in stock and on hand. That means it also requires specific buildings and facilities specialized for such biological research, and very large amounts of both electricity and water reliably consistently available. Don't forget, such equipment, machines, and computers need regular maintenance and service, and thus need specialized expert technicians for troubleshooting and repairs. And don't forget that buildings themselves need regular maintenance, especially when they have such specialized facilities. Things like the electrical system, the A/C system, and plumbing: it becomes really important to keep these things in check for such facilities. Not to mention the regular cleaning. Biological research also requires proper disposal of biological and hazardous waste, including hazardous chemicals. It also requires the capability to receive (and send) a lot of shipments; but you have to appreciate the sophistication of the infrastructure that's needed for the kinds of shipments biological research laboratories need. Shipments have to be on time; and the option for overnight delivery is highly preferred (possibly necessary). You need the capability for refrigerated shipping, which requires special trucks. You need the capability for shipping of hazardous materials of various kinds, some of which might also require special trucks; but most importantly, it requires the means and capabilities for immediately dealing with an accident or spill. Furthermore, generally speaking, safety issues and concerns require all sorts of codes and regulations, which then require inspections, and probably special kinds of insurance.
It's very expensive research.
It would seem wrong to leave African nations and scientists on their own with very few such facilities while we have plenty here in the Westernized nations, but would grant no use of them to anyone who wanted to do CRISPR research with human embryos because we decided to prohibit it.
You might think, perhaps we would make an exception if the scientists wanting to do it could show that it would allow them to deal with or find a solution to some sufficiently horrible problem that many Africans face. (We always seem to be asking blacks to prove themselves before we're willing to consider them and their needs as equals with us and our own… Then again, not so equal, since it's got to be pretty bad for them before we give in…)
But this would surely be unfair: considering how new the territory is, we could not reasonably expect anyone to have solid hypotheses to start from; research into a mostly unknown territory has to begin with a whole lot of questions and exploring for the sake of just finding out what's there.
Now imagine that some African nations and their scientists (and anyone else who would have to play a role, obviously) were able to build the facilities needed for the research, and take care of all the things that need to be taken care of for such research to take place. And the facilities are just as good as anything we have, and their scientists are just as good as anyone we have; in other words, there is no good reason to doubt the quality of their work.
What would happen when they want to begin publishing their findings? It is extremely likely that no respected scientific journals would publish their work. Because the "respected" journals are pretty much all based in Western countries. And even if there are some respected journals based in other countries, they still very likely wouldn't publish the work because the Westernized world would have made CRISPR research on human embryos taboo, and the West pretty much has a monopoly on scientific authority.
But let's imagine they do find a journal willing to publish. If it were a relatively unknown journal, it may never even be noticed by much of the scientific community; but even if it were, depending on who and where they are, they may very well be dismissive of the work, because it wasn't published in a recognizably "credible enough" source. It would be very unlikely that a journal based in a Western country would be willing to publish the work, because of the culture amongst Western scientific journals (I mean, the editors), that journals are concerned about their reputation, and thus would more than likely not publish anything based on something that is considered taboo in the scientific community. (The paper that got everyone riled up over CRISPR back in April was actually rejected by both Nature and Science because of their worries about potential ethical concerns.) But even if they were to find a recognizably credible Western-based journal willing to take the risk, the work would undoubtedly be attacked left and right by the majority of the scientific community, who would find every reason possible to discredit and dismiss the work. And have no trouble imagining that they would find ways to discredit and dismiss it that would be really just be based on the work having come out of Africa, that that alone would somehow give reason not to trust it. In the very least, the reaction and attacks would probably focus so much on the ethical aspects that the actual scientific work and findings would get lost in the discussion.
That, of course, gives a worst case scenario. But it would not even have to be that bad in order to basically cause problems for the scientists doing the research, and potentially cut short the research. We already know how much politics and public affairs can influence scientific practice and research. Enough bad publicity (and perhaps misinformation) could influence the local government to shut down the research and pass legislation to bar further research; or influence whoever is paying the bill for the research.
I said above that one reason why non-Westernized nations and people ought to be part of this whole global conversation because they face some very different problems from those that we do. But we certainly cannot be trusted to take their problems into consideration without their input, without their being an active part of the conversation.
And I have to say, I feel as though anything even remotely close to "designer babies" objections or concerns is something of an insult to Africans and only speaks to our privilege: I feel confident any scientists (and doctors) in Africa who might favorably consider research using CRISPR on human embryos have far more important and dire concerns than frivolous things like parents wanting to make their children more attractive, more athletic, or whatever. You know, things like malaria and HIV. I would say another possible issue of concern in Africa is albinism: aside from the obvious health risks, albinos in some parts of Africa face horrible discrimination and treatment, including being murdered. Yes, really, and for no other reason than being albino. I could easily imagine an albino in Africa saying that s/he would wish the genetic mutation to be eradicated so that no one else would ever have to suffer what s/he has gone through. And I would not doubt that some albinos have been murdered by their own parent(s) or other family member(s) - or even given over to murderers by parents or other family members. Now, this may seem paradoxical, but I could also imagine that the ability to edit human genomes to correct the mutation for albinism would bring education to people about what albinism actually is, and such education could eventually eradicate the discrimination. (Because genuine understanding is what stops hatred and discrimination and mistreatment.)
Here's the relevant thing to know about HIV in the context of this discussion: there is a small percentage of the human population who carry a specific allele, i.e., a specific genetic variant - call it a specific genetic mutation if you like - that makes them immune to HIV. Yes, immune. Now considering how much of a serious problem HIV still is in Africa, wouldn't it be wonderful to, sometime in the future, be able to give a whole lot of new babies that immunity?
Then, of course, there's the malarial immunity of being heterozygous for the sickle cell gene.
And all in all, because access to and cost of healthcare is such a serious problem throughout Africa, both at the levels of the individual and the government, being able to prevent certain diseases and illnesses could be one of the greatest benefits to so many Africans.
But we have to back up a bit, because, if that is even possible, it is certainly a long way off into the future; we'd have a lot of work to do before we could get there.
However, since I'm trying not to make these entries too long, I'll end this one here and pick up the discussion in Part IV.