Widespread criticism followed the late 2018 reports that researcher He Jiankui had edited the genes of twin girls who were then born.
The criticisms betray an ominous, persistent flaw in the current state of bioethics and scientific norms.
He Jiankui’s experiment is a radical leap forward for genetic technologies that threaten human nature, not only because the genes of human embryos were edited (this has been done before), but because twin girls were born as a result.
Here’s a summary of the published criticisms of this new experiment:
- The edit to the girls’ DNA performed in this experiment will likely have unintended effects on the genetic nature of their descendants. The unintended effects may be harmful to persons in future generations, and they may be replicated widely throughout the genetic nature of humanity (the human genome or germline) if there are many descendants.
- He Jiankui ignored an ethical consensus among his professional peers, bioethicists, nearly all universities, and nearly all governments. This ethical consensus asserts that such “germline engineering” should not be attempted on humans until the available gene editing technology can be more accurate and scientists can more reliably predict the long-term effects of any germline engineering.
- The researcher gained the consent of the parents through conversations and documents that did not meet the official guidelines of his employer (a university) and that probably did not educate the parents fully on the implications of their consent.
- The gene editing was supposedly conducted to prevent the girls from being infected with HIV, but the girls had “normal” genes and were likely to be healthy without the experiment. The gene edit that was performed does not provide complete immunity from HIV, and it has made the girls more likely to die if they get the flu and more likely to contract West Nile Virus. The experiment therefore had no medical purpose and was potentially harmful.
- The researcher had a financial conflict of interest related to the two companies he had formed. His secrecy during the experiment, promotion of the results in YouTube videos, and contract with a public relations consultant indicate that his interest in personal fame was a primary motivator rather than the welfare of persons or advancement of science.
I have to agree with all of these criticisms. So what is the “ominous, underlying flaw” that I mentioned at the beginning of this post?
The public criticisms of He Jiankui’s gene editing experiment demonstrate no respect or concern for given human nature.
When these scientists and bioethicists expressed fear over the unintended effects of germline engineering in future generations, they were motivated only by a desire to prevent new genetic variants or abnormalities that will limit the functions of human beings or perhaps cause suffering.
Expanding individuals’ activity and enjoyment of life are certainly worthy goals, but are they the most important? Are enhanced pleasure and productivity all that define the value of a human life?
Doesn’t given human nature point to a meaning that is expressed only through the struggles of life and the opportunities for compassion and love that we experience in our shared struggles?
The demands of these critics and scientific associations are for slowing and delaying the testing of genetic editing on human embryos, and especially the editing of the DNA of children that will be born. Once the tools for genetic editing are more accurate and the effects are more predictable, even the critics of He Jiankui argue that researchers should proceed with their experiments on humans.
The prominent critics of He Jiankui’s experiment do not show any concern or even mention the problem that such germline engineering could have the effect of altering DNA in a manner that limits or eliminates essential characteristics of human nature as we know it; the public concerns relate only to “health”, avoiding genetic “abnormalities”, and functional capacity.
Diversity in functioning, experience of suffering and achievement, and the respect and compassion shared with other persons – all of which have been essential components of our given human nature – are targets for elimination. The published critics do not even acknowledge that such alteration of given human nature may be worth some thoughtful and careful discussion.
The critics do not express any qualms about eventually conducting extensive experiments on human embryos that are then destroyed. They entirely sidestep the decades-old controversy about the morality of such experiments.
The critics and media irresponsibly apply the goal of medicine, which is to assist living persons to be healthier, more comfortable, or more capable, to the goals of germline editing.
The persons most affected by germline editing are not living persons, but members of future generations, so germline editing is not really a medical activity. Germline editing is about control, asserted by parents, doctors, or public policy officials, over what kind of persons will be born. It is an act of power over the future directed by the interests or perceived goals of currently living persons.
Any moral attempt to engage in germline engineering would have to be guided by extensive discussion and deep thought about the relative values of human dignity, capability, and relief from suffering. Are there worthwhile purposes for germline engineering that consider the way in which human beings treasure their given human nature? How can they be pursued responsibly?
Critics of He Jiankui’s outrageous experiment in genetic editing and germline engineering made some good points.
But they ignored the most important consideration of whether, and how, given human nature can be valued, preserved, and protected.
I suspect that future generations will not forgive such negligence.
Only a humanity to whom death has become as indifferent as its members, that has itself died, can inflict it administratively on innumerable people.
~ Theodor W. Adorno