by Matthew Eppinette, CBC Executive Director
In a world where it seems the news is endlessly dominated by events in and around the White House, one story this week has clearly broken through: U.S.-based researchers have succeeded in editing the genes in human embryos.
This news was first reported by MIT Technology Review, but numerous other outlets -- Associated Press, Scientific American, Science, Vice, The Atlantic, NY Post, Washington Post, New York Times, and more -- have picked it up now that the academic paper has been published.
There is no doubt that this is a remarkable scientific development. Any of the linked news stories above tout those details, so I won’t rehearse them here.
However, this development raises a number of important ethical questions. One that is raised in most media reports is that of safety, by which they seem to mean whether targeted DNA edits can be made without producing other, unwanted changes. On that measure, this experiment has been more successful than not: 36 of 54 embryos in one run and 42 of 58 in another.
But what about the long-term safety of these germ-line changes, changes that will be passed on to offspring, and to their offspring, and so on, once the technology is put fully into use? The fact is, there is no way to know what the effect of editing the human germline in this way will be. None.
We are told that eggs from 12 healthy young women were used for this one experiment. The short-term risks of egg donation are well documented (by us), and the long-term risks of egg donation are completely unknown because they have not been studied. How many of the young women who donated their eggs were harmed? How many more eggs will be required?
The embryos in the experiment “were destroyed after about three days.” The destruction of at least 130 embryos (by my count) receives little to no comment in the media reports. The use and destruction of human life at its very earliest stages seems to now be simply a routine, unremarkable aspect of science.
From the news reports, the overriding ethical concern seems to be whether “designer babies” will be coming soon to nurseries near you. We’re assured that they are not, and probably never will be.
Alta Charo, a bioethicist at the University of Wisconsin, tells the NYT, “Nobody’s going to do this for trivial reasons . . . Sex is cheaper and it’s more fun than IVF, so unless you’ve got a real need, you’re not going to use it.”
The same article earlier quotes Stanford’s Hank Greely on a different aspect of the experiment. Greely has argued often that within the next 30-50 years, almost all babies in the developed world will be conceived in laboratories so that parents can take advantage of all the technologies available for ensuring they have the best possible children. It will be, in his words, the end of sex.
I tend to think that Greely is more right on this than Charo. The idea of “real need” is malleable, and once something with great perceived benefit becomes available, it’s difficult to resist.
Most often, it seems that ethical questions, particularly the ones raised in news reports, tend to revolve around questions of consequences, of balancing harms and benefits, of whether a particular action or treatment will, on balance, make things better or worse. Indeed, this is an important part of decision making.
But should consequences be the only, the overriding, or the most important factor?
The question, or worry, over the prospect of designer babies points to larger questions that too often go unaddressed -- questions, for example, about how we think of our children. Certainly, children are gifts to be received, cherished, and cared for. Part of caring for children is helping to shape and form them in certain ways, helping them to gain not just knowledge, but wisdom, as they grow and develop. What are the limits to shaping and forming children? The prospect of truly turning children into products that we design and manufacture to precise specifications should push us to think deeply about such questions.
Beyond that are questions about the scientific and medical enterprises. Paul Ramsey warned many years ago, “There may be valuable scientific knowledge which it is morally impossible to obtain. There may be truths which would be of great and lasting benefit to mankind if they could be discovered, but which cannot be discovered without systematic and sustained violations of legitimate moral imperatives.”
What are those moral imperatives? Care for the most vulnerable among us. Acknowledgement of our limitations. How can we best care for one another in the midst of our finitude, in the midst of our mortality? What limits are we willing to draw? What will we say no to? We need to consider “what our bodies are for, how suffering relates to these purposes, and how technological medicine assists or hinders these purposes.”
How can we as a society again have a sustained and fruitful dialogue about such larger, overriding moral imperatives? Is such dialogue even possible?
We at The Center for Bioethics and Culture will continue to raise these issues, will continue to point out those ethical dilemmas that are being overlooked, continue to be a voice not only for specific ethical issues but also for the larger moral imperatives. (This is one reason why our Paul Ramsey Institute is so very important.)
So, to be clear, germline genetic editing/engineering should be rejected by science, by society, by each and every one of us.