Ding, Dong. Designer Babies May Be Here…

And “responsible” scientists, ethicists, and policy makers should have been ready for them.

News erupted on November 26 that Dr. He Jiankui, a physicist in China, may have created the first genetically engineered embryos. Whether he has or not is still up for debate as his claim has not been fully verified by independent scientists and hasn’t been published in a peer-reviewed journal. One of the hospitals Dr. He claims to have done the work in says it didn’t happen there.

Thing is, it really doesn’t matter whether this particular claim is true or not. Sooner or later, someone will engineer a human embryo to have a specific characteristic. Once that is done successfully (if it isn’t done now), the gates will quickly open wide to a flood of similar claims and equally rapid changes in the nature of the genetic gifts many (particularly the wealthy or scientifically connected) will be able to give their children for all time. This is something scientists and ethicists have known would happen sooner or later and yet the general reaction has been shock. A most unfortunate response given that we should have had policy in hand for this and should have prepared ourselves and the public better for this eventuality.

The reasons for work like that announced November 26 are many but ultimately come down to three: demand (as expressed through money), the desire to do good (by helping parents have healthy babies) and fame (as expressed through media and social media coverage and, hopefully, respect from one’s peers). All are very human and therefore, along with possibly a good bit of hubris on the part of some researcher somewhere, could and should have been predicted long ago.

These reasons are powerful and can, in some minds, justify the headlong rush some scientists are engaging in to genetically engineer human children. A rush that the techniques we are using may ultimately support but which the vast majority of Ph.D. trained scientists, like me, argue strongly we don’t have enough knowledge to employ in embryos meant to become children, safely, effectively, and (many believe firmly) ethically at this point.

Dr. He’s announcement has reenergized a terrific national and international debate over whether human embryos should be engineered or not. Bioethicists have been asking “should we genetically engineer children?” for some time. Various articles describing the new claims point this out most effectively. Of equal, and ultimately greater, importance is that prospective parents have been hoping for capabilities like this for as long as scientists could dream of making them possible.

The fact that parents have apparently sought out Dr. He’s help shows there is demand for assistance of this sort. As someone who published a dissertation on the possibilities and challenges associated with regulating “controversial” science in 2004, I can say with utter confidence that, ultimately, the demand side of the equation will win unless the techniques we have now (or those developed later) indisputably prove not to work for all time. As we have seen over the last few days, proof of their reliability — whether positive or negative — may come at a very high cost to children, families and society’s willingness to trust science as a whole.

As the storm around Dr. He’s claims shows, the “wins” (whether claimed or real) are likely to come far faster than either our scientific knowledge or ability to appropriately regulate its use will justify. That, ultimately is the fault of scientists, ethicists and policy makers, not the parents who so desperately want this help — whatever we think of it, and them.

Whether this particular claim proves out or not, the key questions a practitioner in this area will ultimately have to answer are: “can we prove it works?” Then: “Can it be used safely?” If “yes” on these questions, then we will see: “who is marketing this technique to potential parents?” Finally, we will learn: “Where was it done, who did it, and who paid for its use?”

The media coverage of Monday’s announcement gives a sense for “who marketed it,” “who done it,” and “who paid for it”. We don’t have reliable answers yet to “is this attempt real?”

If so, we don’t know: “did it work safely in the two children born with at least some reported modifications?” We also don’t know: “Just because they were born, will the children thrive long-term after having had their DNA edited by someone other than mother nature?” The answers to these questions should have been developed (as far as possible) in years of carefully done work in a variety of experimental systems in the lab.

Unfortunately, it is almost certain this attempt came too fast. Equally unfortunately, we may not know if it will “work out” for many years.

Whether in this case or another attempt either happening now, or to happen soon, all of these questions will be answered. They will be answered because there is an enormous, proven market for techniques that can be used to ensure that a baby will be born without DNA sequences that can lead to genetically-mediated conditions; many of which are devastating as we were tragically reminded by the Charlie Gard case of 2017.

If market driven research and technique development work as they “should,” people will work hard to publish data (hopefully from reliable experimental work) suggesting they have an “effective and safe” technique. Demonstrating at least partial effectiveness as was claimed November 26 can let purveyors tell desperate sets of wealthy prospective parents: “We should be able to use this technique with an ‘acceptable’ chance of giving you a healthy baby.”

Problem is, with a technique like this, one would need many years to prove whether it is truly safe. Years we likely won’t have whether due to Dr. He’s work or that of some other enterprising scientist/business person responding to the very human demand for its use by prospective parents…somewhere. Years smart scientists should have known we wouldn’t have because of the relative ease with which some rogue investigator could deploy it.

Objective proof of effectiveness in this case hasn’t appeared here so far, at least where vetting by scientific journals is concerned. Media reports show that some of the data has been accessed by leading researchers and they think it at least possible the conclusions that Dr. He claims are actually true. Whether they are or not, his relatively low reported rate of success is a warning that using CRISP-R/CAS9 to genetically edit human embryos is still far from ready for the big-time.

This specific technique is probably not ready now, and may never be ready. Whether it is or not, and whether it will be or not, people will keep trying because the prize in money, recognition, and ultimately, healthy children who would not otherwise have lived (or in children born with advantages they couldn’t have had naturally) is simply far too big to ignore.

As early as 1997, Princeton’s Lee Silver predicted parents’ desire for gene editing in his “Remaking Eden,” because they feel strong personal, economic and social pressures to have healthy, “beautiful” children who should become healthy “attractive” adults. Dr. Silver may not have predicted the specific technique used but the overall progress of DNA technology was visible to him then, which makes it even more concerning that people have been so surprised by its use now.

All one needs do is to look at the multi-billion dollar assisted reproduction industry to know there’s a market for help in having hopefully healthy children. Many parents pay purveyors to use specific techniques like pre-implantation genetic diagnosis (PGD) to try to ensure they will have babies of a certain gender or who will hopefully not have a certain condition caused by “unhealthy” genes. PGD is regularly used to reduce couples’ risk of having babies with known (or potential), chromosomal abnormalities and/or single gene mutations that can lead to thousands of DNA-mediated conditions. If and when gene editing proves reliable, it will represent a way that is both active and effective to impact what traits an embryo carries. PGD also works on these characteristics, but somewhat less effectively given that it can only find the desired (or undesired) trait in embryos already present, rather than actively changing embryos to “ensure” they will or won’t have a particular DNA sequence or gene-mediated characteristic that parents wish to prevent in their children.

According to Dr. He’s YouTube statement, the desire to reduce the risk of HIV in babies by parents (at least one of whom had it in all couples) was a huge driver for this attempt.

As I showed in my Genetics dissertation published from Yale in 2004, different countries respond differently to “controversial” science like this. This happens because the needs and desires of the populations and the politicians of those countries vary. This is a reality whose importance to the policy making process cannot be understated, whatever form of government a country has.

For example, one poll taken in 2016 indicates nearly half of Americans would use gene editing technology to prevent possible DNA-mediated conditions in their children. Another poll published this year from Sunyat-Sen University in China shows more than sixty percent of Chinese people support genetic engineering of human beings for therapeutic purposes, and yes, this poll indicates that preventing HIV infection is considered acceptable in China whereas in the West it is far less so.

Similarly, different scientists’ have equally diverse views. As we’ve seen this week, it takes only one scientist in the “right” (or “wrong” place depending on how you see things) to take action whose impact will be felt for a very long time world-wide.

Policymakers who object to the technology therefore have a problem: if they succeed in blocking it somewhere, research and real world experience indicate other governments may well permit its use. An example of this is the fact that the UK permits the creation of “three person babies” whereas the US does not at this time. If this happens, these techniques will be available to anyone wealthy and desperate enough to find providers with the marketing — and hopefully scientific — skill needed to sell people on trying them.

In fact, given the people who may have pushed the Chinese research forward and similar ones represented by the three person baby controversy of 2016, NIH Director Francis Collins’ choice to disallow Federal funding for research in these areas may ultimately leave the US less able to set boundaries on the field than we would have been if he decided to support limited research in this area. This choice may well lead to more irresponsible gene “editing” of human babies than would have been the case if the NIH had gotten involved and tried to shape developments in this research.

The announcement of November 26, (whether “true” or “fluff”) is a reminder that we are rapidly losing the capacity to effectively ask, “Should we” questions about gene editing in human embryos that will ultimately become living, breathing, children.

As our knowledge of science grows, becomes more globalized, and is increasingly easy — and inexpensive — to acquire for people with different morals, needs and wants, it becomes necessary to argue that we need to start asking far more applied questions like: “how will we oversee development of this technology and how will we make decisions about providing access to it over time?”

These are questions we may not be able to give comforting answers to. IE, we may find it impossible to manage the introduction of technologies like this in slow, equitable, carefully considered ways that make most people comfortable.

We may well need to learn how to prepare everyone for this eventuality. This is something scientists and policy makers have done very poorly so far, as this new controversy demonstrates.

Whatever answers we develop to questions of regulation and implementation of this technology will impact how and when further attempts are made. Unfortunately, they will ultimately not decide whether scientists and the consumers paying for these attempts will make them.

There are definite limits on the power of policy and individual governments to stop choices and actions like the birth of gene edited children — whether the technology is ready for use or not. That said, pre-prepared policy and regulations on what might be called premature action leading to the birth of genetically engineered children (not the kneejerk responses of the sort we have seen over the last seven days) may assure many that funders, universities and scientific institutions are doing their best to put reasonable measures in place to ensure that the next steps — and the past proves there will be further steps in this and other areas whether we are ready for them or not — in adding to our skill and knowledge in this potentially invaluable and society-shattering will be taken with careful deliberation.

Follow @drmatthewweed on Instagram and twitter for thoughts on science policy, college and graduate school admissions, service to society, health care and other topics.



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