The reported birth of genetically altered twins using CRISPR-Cas9 genetic modification technology has rightly drawn widespread condemnation for a host of reasons. I’d like to join that chorus and focus on what this reprehensible episode says about the research culture and the educational system that helps shape it.
It’s easy to think of He as an outlier, a rogue scientist following a solitary path to unethical research. But that isn’t the case. Before taking an academic position at the Southern University of Science and Technology of China in Shenzhen, He completed his doctoral work at Rice University and his post-doctoral work at Stanford University, two premier U.S. biomedical research institutions.
During the course of his training, He clearly acquired and mastered the technical skills and competence required to guide the in-vitro fertilization and gene modification procedure used to disable the CCR5 gene to try to confer resistance to HIV infection. Yet through his many years of science education and training, he apparently failed to either learn what his professional responsibilities were or acquire the character traits needed to fulfill them.
Think about that for a moment. During his years of education and training, He must have successfully completed curricula expected to teach the responsible conduct of research. He undoubtedly interacted with scores of researchers, and had informal conversations with colleagues about all manner of topics related to what it means to be a researcher and how researchers should conduct their work. Somehow none of these were sufficient to dissuade him from the course of action that brought him to this moment in the international spotlight.
To appreciate the extent of this failure, note two key statements He made to the media and at an international conference on gene editing in humans that just concluded in Hong Kong. “I feel proud,” He told the 700 or so gene-editing experts attending the conference. He also told the Associated Press that editing the genomes of the fertilized eggs “is going to help the families and their children.”
The key item to note is that He wanted to be of help. In other words, he wants us to know he had the best of intentions. That’s good to know, but it hardly offsets all the concerns his work has raised. A big one is that He chose to impose the unknown potential of CRISPR-Cas9 to cause health problems in the twins due to off-target effects, either early in life or years down the road.
He was fully aware of the controversial nature of his research, so much so that he sought ethical guidance from father and son experts in bioethics: William Hurlbut of Stanford University, a member of the U.S. President’s Council on Bioethics in the early 2000s, and J. Benjamin Hurlbut of Arizona State University, an expert in bioethics and science and technology studies. Yet he chose to keep them in the dark about the actual state of progress of his work, and it appears that he found their expressions of concern and the need for caution and further circumspection they conveyed to be unpersuasive.
He also failed to subject his work to any ethics review other than his own. And he felt no need to notify his hospital colleagues of what he was up to, in case they would like to remove themselves from his clandestine activities.
Good intentions do not magically negate these and many other concerns.
I worry that such an accomplished and internationally educated researcher can demonstrate such a profound lack of proficiency when it comes to discharging his unambiguous ethical and professional responsibilities.
I was only trying to help is the kind of defense a child might offer. What we would like to hear instead — cultural and personal contributors to behavior notwithstanding — is reference to internationally recognized professional norms, ethical principles, and values that should command researchers’ attention and allegiance.
The easy answer to this loathsome episode is to say that He is an aberration, a bad apple, and ethical transgressions like his are unavoidable since we can’t weed out such players from the scientific enterprise any more than we can weed them out of other endeavors. I think that response is a cop out.
In addition to renewed focus on the ethical concerns attached to genetically modifying human germ line cells and embryos, this case reveals the ineffectiveness of our educational institutions to inculcate the most basic understanding of research ethics into those whom they purport to educate, so researchers will have the requisite skills and motivation to apply that understanding. I’m baffled that those same institutions take so much pride in their educational programs.
We can convene as many international summits to discuss the ethics of using genome altering technologies on humans as we like, but we are fooling ourselves to think that they are anything more than window dressing when we tolerate an educational and training culture in biomedical research that turn out individuals such as He who thinks that an “ethical” defense like “I was just trying to help” absolves him of his clear, basic, and uncontested professional responsibilities to conduct research in an ethically responsible manner. That he can receive an advanced science degree, migrate through elite institutions, and command a presence and platform at a major gathering such as the Second International Summit on Human Genome Editing, and still be so ill-informed about or unmoved by his professional responsibilities with regard to how to conduct research responsibly is the real scandal here.
Let’s not overlook that.
Mark Yarborough, Ph.D., is professor of bioethics and director of the Clinical Research Ethics Program at the University of California, Davis.
I hear a lot about the shortcuts he took. That in itself doesn’t tell me that what he did was or was not unethical, only yay he didn’t follow procedure.
What in the act of modifying these embryos and allowing them to grow is immoral?
This article is painfully self-righteous and self-serving.
We should double (or triple) the number of “ethics” classes science students have to take. That will totally work. And we can make them take lie detector tests, to be sure they have internalized the objective moral truths that someone (like this guy) has decided are right, true and good.
Problem solved. Boom.
I respectfully disagree. Nothing, including education on ethics, can reasonably be expected to work 100% of the time. Perhaps more oversight is needed.
And I guess that Dr. Mengele was “just trying to help” advance medical science, too. There is a reason for medical (and just plain human) ethics. It involves a balance of values for the good of humanity. Any notion that “scientific experimentation” exists apart from concerns about consequences is wrong and dangerous to mankind.
What I need explained is why this research is considered “unethical.” I assume that the parents of the twins were advised of the risks (to the extent these are understood) and consented to the “procedure.” So is the ethical argument that scientists do not yet know enough to assess the potential consequences of altering the human genome? Or is it that scientists have decided that any manipulation of the human genome is simply unacceptable (if so, for what reasons)? Or is it that Dr. He “went rogue,” in other words, that he refused to accept the consensus view of the scientific establishment? Please explain to a layman why what he did deserves to be denounced as “reprehensible.”
What do you consider more ethical to leave mankind with AIDS or to modify genome?
No, the parents were not informed. The procedure was described in the “informed consent” form as “HIV vaccine research,” not “we’re going to change your kids’ genomes forever, for better or for worse.”
I agree with this. It’s unethical to have children suffer from a genetic disease while upholding the potential treatment right above their hands. My father uses this to treat cancer and so far there hasn’t been one slip and it’s saved many lives. With the articles mindset, chemotherapy would be unethical as well.
Missed the chance? You are kidding? Everybody just could not wait for it, lol. Furthermore, I doubt the Chinese has made no change in genome actually, at least in any HIV-related way. It’s too hard and useless, big pharma will fight HIV with all necessary permissions from the goverment. He just have done an empty cycle of CRISPR usage on human and broaden the ethical boundaries. Now other countries have no choose but to make their own gene-modified people. It’s just like the nuke.
The research is banned now. No one can do it any further. The Chinese government banned it and its illegal in many other countries so. Mission failed
The research was newer legal obviously. But he did it. Who and how can prevent other underground labs to do the same?
Look for “Despite CRISPR baby controversy, Harvard University will begin gene-editing sperm”
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