Designer Babies


Leonard Zwelling

It was bound to occur and it was bound to occur where it did.

A Chinese scientist, possibly with American assistance, has altered the genes in human embryos, implanted the fertilized eggs, and the embryos grew up to be twins that were delivered in China. Supposedly (there has been no peer review of the work as of yet) the scientist disabled a gene that makes the chances of contracting HIV more likely and did nothing else to the germ line. Of course, proving the latter will take time. Whether or not these children are indeed otherwise normal remains to be seen.

What is clear is that scientists around the world are outraged at the flouting of ethical and moral norms on the part of the Chinese scientist. This work is condemned in the West and, in fact, in much of the rest of the world. But, ineluctably, the ability to do something makes it likely that it will be done and indeed it may have been. Like I said, the proof remains as a presentation is supposedly scheduled for Wednesday, November 28 in a conference in the Hong Kong. As of now, the likelihood of the accomplishment is greater than 50-50.

The question remains, how bad is this?

I think there are two levels at which this must be addressed.

At the scientific level, this had to happen. The CRISPR technology was made to move genes in and out of cells—turn them off and turn others on. It has been used successfully in many labs throughout the world and it was only a matter of time before the technology was employed in this fashion. People want what they want. If their babies can be taller, smarter or have bluer eyes, they may well seek the services of those unscrupulous enough to provide these promises with real technology. It remains to be seen whether the promise will be equaled by the reality despite the fact that most scientists don’t think it should even be tried. It could be done, so it was. Whether the people involved truly understood the actions of the scientists and the possible risks to their offspring also is unclear as yet.

The ethics issue is far trickier. Should the technology be employed to eliminate the Tay-Sachs gene in a baby known to carry the lethal mutation? What about eliminating cystic fibrosis, or diabetes, or cancer in BRCA1 carriers? What is off-limits and what is not? It’s not so easy to know because if medicine is supposed to alleviate suffering and this technology can do that, why not use it? Whether this was necessary in this case is not really debatable as there are other ways of preventing the transmission of HIV from infected fathers to their offspring.

Then again, why is man delving into regions in which he has no place? But man has been doing just that since there have been daring men and women dissatisfied with the way things are. They want to make change. They want things to be better. Why not in this sphere?

It is easy to come to the conclusion that messing with the germ line of embryos is off limits. I happen to believe that this is true, BUT others may not. If a family has carried pre-senile dementia in its DNA for centuries and there is a chance to eradicate it forever, is that wrong?

These are tough questions. Special boards will need to be assembled to determine what society wishes to allow science to do and what will remain off limits. All I am saying is that it is not as clear as it seems. Is it ever?

Once again, as with all forms of organ transplantation, psychoactive drugs and surrogate parenting, the science has run faster than the ethics. Now the ethics has to catch up. Fast.

Leonard Zwelling