Public Discourse 7 April 2016
Earlier this year, when the UK Human Fertilization and Embryology Authority gave the green light to genetic modification experiments using excess human embryos from IVF procedures, it generated little popular backlash. Maybe this should not be surprising given that it followed on the coattails of widespread acceptance for using excess IVF embryos to produce embryonic stem cell lines. In fact, given that these unused embryos would probably be discarded, the decision to use them for genetic research was heralded as a triumph of common sense in some parts.
Yet human genetic modification seems a bit more Frankensteinian than embryonic stem cell research, so to head off any sci-fi-fueled concerns, the UK Authority did put some significant restrictions in place regarding this type of research. As a result, research involving the genetic modification of embryos can only be approved if the embryos (1) are not allowed to develop in culture more than seven days and (2) are not implanted into a woman’s uterus.
These stipulations currently prevent the genetic alteration of humans for clinical purposes in the United Kingdom, which is consistent with the thinking of National Institutes of Health Director Francis Collins, who has referred to such modifications “as a line that should not be crossed.” But the question remains: How solid is that line? If viewed from the perspective of the scientific community, the answer turns out to be “Not very.”
In discussing why we should not pursue the genetic modification of human embryos in the clinic, Dr. Collins mentions a number of concerns. These “include the serious and unquantifiable safety issues, ethical issues presented by altering the germline in a way that affects the next generation without their consent, and a current lack of compelling medical applications.”
But the type of research approved in the United Kingdom is designed to eventually address the safety and medical concerns associated with applying this technique to clinical use. In fact, Chinese researchers have already been pursuing the genetic modification of human embryos using the powerful new DNA modification technique called CRISPR/Cas9-mediated editing. This type of editing, which the UK researchers also plan on implementing, has been used to successfully genetically modify a variety of organisms, but not much is known regarding its ability to successfully edit DNA in human embryos.
To address this, the Chinese research group set about quantifying the safety and efficacy of using the technique in human embryos. They found that it had a low efficiency in human embryos while causing a significant number of aberrant—often referred to as off-target—DNA modifications. These off-target modifications represent the type of safety issues many scientists are concerned about, but the Chinese group makes no bones about where their research is headed: “Our work highlights the pressing need to further improve the fidelity and specificity of the CRISPR/Cas9 platform, a prerequisite for any clinical applications of CRISPR/Cas9-mediated editing.”
In fact, as more research on human embryos is performed, the more efficient the technique will become and the fewer the off-target modifications. What then? As far as finding a compelling medical application for this technique, the UK researchers argue that it may help in developing treatments for infertility. Likewise, a host of genetic disorders are triggered by the inheritance of a single aberrant gene. If you could efficiently swap out the defective gene using this technology, clearly a compelling medical application would exist.
When we reach this point (and given the desire to fund this type of basic research on human embryos, this is a “when,” not an “if”), the only thing holding back its widespread use would be ethical considerations. Unfortunately, in a society already dominated by a utilitarian ethic that views human life as a commodity to be had, manipulated, bought, and discarded, serious ethical concerns will certainly get short shrift.
It seems only fitting that the UK research group advocating the genetic modification of human embryos is studying infertility, because it is infertility treatments that have gotten us into this situation in the first place. Without the widespread practice of IVF, an extremely inefficient and wasteful process (at least from the perspective of the human embryos involved), the push for research into the genetic modification of human embryos would have had a difficult time getting off the ground. In fact, IVF treatments—which produce a huge excess of human embryos—have not only created the material for this research, but have also facilitated the creation of a mindset that views human life as a commodity to be manipulated.
While not downplaying the emotional difficulties associated with infertility or questioning the intrinsic human dignity of those created via the IVF process, it is important to be honest regarding the myriad problems the IVF “solution” has created. The process itself involves the production of excess numbers of human embryos, only a small fraction of which will ever be implanted into a uterus. These excess embryos have been the subject of litigation between parents, between oocyte donors and IVF clinics, and between sperm donors and biological mothers.
But the issues don’t stop there. Couples have sued because of sperm mix-ups that have led to biracial babies. Surrogate mothers carrying IVF embryos have been involved in litigation regarding everything from custody, to demands for selective abortions, to compensation issues. The entire IVF practice has facilitated a mindset of seeing babies as commodities to be acquired, contracted for, litigated, and purchased through whatever means necessary. They become commodities to be tailored to the desires of the parents either through selective reduction of multiples, through choosing the appropriate characteristics of the sperm donor, or through pre-implantation genetic diagnosis, which can be used to screen for everything from disease susceptibility to the gender of the child.
Viewed in this manner, the leftover embryos become just one more commodity to be manipulated. Since most of the excess embryos will be discarded in some manner, the idea of donating them to research seems to many to be a humane practice. In fact, a majority of Americans support this practice. It is the presence of excess embryos that has fueled research on embryonic stem cells, and it now appears that it will fuel research into the genetic modification of humans.
The UK research has been approved only on leftover IVF embryos, and it is debatable whether it would have been approved if researchers had to create embryos specifically for their experiments. In general, the public is much less supportive of this idea.
But now that this research is moving forward, thanks in large part to the presence of the IVF industry, we are one step closer to designer babies that are produced, bought, and sold for profit. We are one step closer to all the litigation, foreseen and unforeseen, that this process will involve. We are one step closer to creating a new level of global inequality between the genetic haves and have-nots.
Many researchers who support genetic modification argue that we might as well pursue this research given the logistical limitations of enforcing a global ban. If it is banned in respectable society, it will just move underground, they argue. While a ban on such research would certainly not stop rogue IVF clinics and countries with minimal research oversight from pursuing it, a ban by a global science powerhouse such as the United Kingdom would send a strong signal stigmatizing this research—and it should be stigmatized, given its ability to irrevocably alter the genetic code of our species in ways no one can predict.
Not surprisingly, many researchers continue to downplay such concerns about human germline modification, pointing to the current UK ban on implanting genetically modified embryos into a uterus. Most of these researchers, however, do not advocate a permanent ban—only a temporary moratorium. We should be realistic and acknowledge that this is exactly where this research is headed. The ban will only remain in place for as long as the technique remains unrefined.
Allowing germline modification research to occur in UK labs will facilitate the refinement of this technique to the point that researchers and IVF specialists will argue that it is safe enough to try on humans. When experts deem it safe, public perception will surely begin to change; the right to have a baby of one’s choosing, through genetic modification or otherwise, is already ingrained—thanks to IVF—in our collective psyche. By then it may be too late to stop the mainstreaming of human germline modifications and the production of designer babies. At that point, we will be forced to deal with all of the ethical and legal issues the genetic modifications of humans entails—issues that will make those associated with IVF look trivial by comparison.