The birth of genetically engineered children — which I discussed here just yesterday — has been confirmed. We are told that two babies were born with a gene (that may — may — be a factor in HIV infection) removed.
What good that does the babies is a huge question. Apparently, the father is HIV positive. But there are methods to “wash” sperm to ensure that a baby is not born infected, so altering their genome instead — and those of their progeny down the generations — was of highly questionable benefit.
Worse: The gene may have other important biological purposes that will now be impeded. For example, I saw one story that indicated the girls may now be more susceptible to flu infection. In short, these babies were used as experiment fodder to allow the researcher to become the “first” scientist to genetically engineer babies.
How Did It Happen?
So how did this unethical experiment happen? We generally permit “the scientists” in this sector to self-regulate through voluntary guidelines. We also smile at researchers treating nascent human life like potter’s clay — objects not subjects — as if that were of only passing moral concern. (An FDA rule does prevent implanting a genetically modified embryo in a uterus, but that is a weak reed, and doesn’t impact the field internationally. It also didn’t prevent the preliminary research that was required to learn how to do what was done here.)
A Green Light
Not coincidentally, the Chinese researcher in question, He Jiankui — now being called a “rogue” scientist because the dirty stuff has hit the fan — claims that a U.S. Academies of Sciences, Engineering, and Medicine opinion led him believe he had a green light. From the MIT Technology Review story:
In his [research] proposal, He assured hospital ethics reviewers everything would be fine. He told them that just one month earlier, in February of 2017, the U.S. Academies “for the first time” had approved the idea of editing human embryos in order to treat serious disease.
No matter that the U.S. Academies isn’t a regulator or government body, that it doesn’t approve of or prohibit specific experiments, or that the advisory body’s big gene-editing report of that year cautioned that heritable genome editing “is not ready to be tried in humans.”
To He’s ears, it was the report’s fundamental conclusion that mattered. Despite many notes of caution, that report’s message was clear. It did not endorse a moratorium on CRISPR babies, as some had hoped at the time. Instead, it said the opposite: gene-edited children were ultimately permissible if the goal was to treat or prevent serious illnesses.
That is the thing about voluntary, self-promulgated professional guidelines: they are as protective as the least ethical common denominator.
How the Game Works
Bioethicist Ben Hurlbut nails the problem quite pithily:
…the problem is the race to new discoveries, “even where there is serious uncertainty about whether the techniques that get developed should ever be put to use.”
“Researchers can just keep asserting that their ‘basic’ research has nothing to do with clinical applications, and the can gets kicked down the road,” he says. “For decades, the research has been oriented toward science racing ahead, shooting first and asking questions later.
That is a circumstance of our own making. But it’s a hard one to wind backward.”
Yes. But cynic that I am, I believe that has been the plan all along.
Here’s the game: Green light what needs to be done today so that researchers can learn how to accomplish the more controversial experiments they plan to do tomorrow. Then, when the preparatory research is completed, hold a professional conference that concludes — lo and behold! — that the once too-controversial experiment can now be done ethically.
In other words, it’s all a con. Will this event wake up the leaders of the world to their responsibility to negotiate legally enforceable and binding protocols to govern this research? It could. But that would require leadership from the United States.
Cross-posted at The Corner.