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A couple of days ago, news about the first designer babies has shaken the world. A Chinese researcher, Jiankui He, and his team at the Southern University of Science and Technology of China have been recruiting couples in order to create the world’s first babies with artificially increased resilience to HIV. The embryos were modified using the CRISPR/Cas9 gene editing tool before being implanted in their mother.

According to the research lead, the twins were born healthy a few weeks ago, and genetic testing performed after they were born confirmed that the editing had actually taken place. While the academic community discusses whether it is acceptable or not to modify human genes, taking into account that the changes made will be inherited by these babies’ offspring and are now added to mankind’s genetic pool, I want to share my own views on designer babies.

Are these the first designer babies? Hardly.

First, and most importantly: If by “design”, we mean that the parents have consciously chosen the qualities of their children, then these are not the first designer babies. When cryobanks with human reproductive cells first opened, they offered the parents-to-be the opportunity to choose their donors and thus their future babies’ qualities, including eye color, height, and blood group. As the donors must also have met the requirements of the bank regarding health and age, one can say that the parent-to-be purposefully improved his or her bloodline. In my opinion, babies that were born as a result of in vitro fertilisation (IVF) using chosen reproductive material from a cryobank are designer babies.

We should also keep in mind that IVF was developed in 1978, and, since then, couples who could not have children naturally (because the woman is past her reproductive age or the male partner cannot have children), have been messing with nature to allow their genes to stay in the genetic pool. Over 8 million children have, so far, been born thanks to IVF.

Over time, information about the donors became more and more detailed, and, several years ago, potential parents became more able to design their babies’ features thanks to the possibility of sequencing the parents’ genomes, which provides a fairly sharp estimate of what qualities their babies could possibly have. Obviously, parents with severe health problems were the first people to test this innovation.

This technique, called preimplantation genetic diagnosis (PGD), was developed back in the 1990s. The idea is fairly simple: if both parents have hereditary diseases, and there is a high risk that their babies are going to inherit them or an aggravated form of them, then, after IVF, the doctors test the embryos’ DNA and only implant the healthy ones into the prospective mother’s uterus. At this early stage, when the embryo only has 8-16 cells, it is safe to take out one cell to test its DNA; it was proven that this loss does not lead to any deformities or illnesses in the baby.

Right now, most places that provide in vitro fertilization also offer IVF+PGD services, which means that we are already surrounded by designer babies whose features remain in the genetic pool. These little miracles, the completely healthy offspring of two ill parents, don’t make the headlines as often as deserved. The IVF+PGD approach is what I would call a very soft and positive version of eugenics: the improvement of our common genetic pool without any sort of violence.

What is more interesting is that IVF+PGD has begun to be used even by healthy women over 35, who would prefer to exclude the possibility of having a child with chromosome abnormalities. However, as genetic testing allows potential parents to know the child’s features in advance, there is a growing demand for choosing the sex and looks of the offspring. We may expect more and more countries to submit to the invisible hand of the market and allow the parents to decide what their new family member should look like.

One more recent example of designer babies involves three parents. Sometimes, reproductive cells are not good enough to be used for IVF, yet the parents still want the child to be their own with minimal genetic influence from other people. A couple of years ago, a boy was born as a result of using a revolutionary “pronuclear transfer” technique. This method, which is now approved in the UK to provide hope to women suffering from Leigh syndrome, involves a fertilized donor egg with healthy mitochondria (the power plants of the cell, which have their own DNA). As Leigh syndrome lies in mitochondrial DNA defects, the nucleus of the mother’s fertilized egg is put into the donor egg after its nucleus has been removed. As a result, the child has inherited his features from three parents: healthy nuclear DNA from mom and dad and healthy mitochondrial DNA from the donor. If that is not a designer baby, I don’t know what is.

If designer babies are already here, then why is there so much discussion of what Jiankui He has done using CRISPR/Cas9?

One answer is novelty. Novelty is frightening, and this is a perfectly natural reaction, as, indeed, CRISPR is a new technique; we don’t know much about the long-term effects of its use yet, we know that its accuracy is still in development, and we are right to be concerned about the CRISPR-edited babies’ health. However, every new reproductive technique has gone through this stage before becoming publicly approved and massively implemented. The current situation with CRISPR/Cas9 is exactly the same as it was with IVF, IVF+embryo cryopreservation, IVF with donor cells, and IVF+PGD. No one knew the long-term consequences when these techniques were first used, and one could accurately refer to them as “immature” back then.

However, in all of these cases, the researchers had the ultimate goal of improving the lives of the parents and the future child by removing the (harmful) limitations imposed by the natural bloodline. In my view, this goal is perfectly ethical.

An ordinary person’s view on designer babies

To be honest, I am not a big fan of reproduction. I find other things in life more appealing than producing and raising a child. It was this way from the very beginning of my conscious life, and it will hardly change in the foreseeable future, despite the fact that I am almost 40 and know that I am getting closer to the end of my reproductive age. If science finds a way to slow down aging and bring it under medical control, my chances will increase, but there is a little problem.

My genetic layout is far from the best, according to the information I already have about my genome. If I give birth naturally, my children will likely inherit a high risk of developing glaucoma and macular degeneration early in life, and they would be likely to develop gout and a vast variety of connective tissue disorders, including problems with heart valves and rhythm. Do I want for my children the life that I have, which involves constantly monitoring my sight, joints, vessels and heart, avoiding factors that can let my genetic predisposition manifest itself? I am pretty good at that, which is why I have managed to avoid lots of health problems so far, but I would still want a perfectly healthy baby who would be able to just enjoy life!

Can IVF+PGD be enough to have a healthy baby? Likely not, as my problems involve too many genes at once. Sure, I could seduce a perfectly healthy young man whose genes would compensate for some of the problems, but it still would mean consciously putting my child through my problems, even if their effects were reduced. It also would mean that I would consciously decrease the health of the bloodline of my man, which, to be frank, I find unethical.

My only solutions would be germ-line gene therapies that would affect my reproductive cells and clear my bloodline from heritable disorders or gene-edited embryos controlled by PGD before implantation.

So, would I vote for applying CRISPR/Cas9 editing techniques to human genes? I would. My reasons would include the work that is now done by George Church and other scientific teams around the globe to define the genes that we could modify to achieve healthy life extension. I totally would not mind becoming a GMO or, say, a “designer adult” with improved health and an extended lifespan or my children being born with perfect health and 200-year lifespans (even in the absence of further rejuvenation biotechnologies) either. The colossal efforts I put into engineering a lifestyle that would protect me from the harmful parts of my genetics are not as handy as a few injections of a viral vector with new genes.

It seems that the members of our community think the same way. In a poll on Facebook, I asked if people would prefer a designer baby or an ordinary one, and I received the results that I expected: around 85% of people voted for a designer baby. A few people also noted in the comments that they would like to see more adults genetically edited – starting with themselves – to improve health, lifespan and mental capacities. The main reason that people voted against the technique was that they did not trust the safety of the current gene editing procedures.

Three reasons for supporting gene editing and even designer babies:

1. WHO’s main goal is to help everyone in all nations in achieving the highest possible standard of health, and it defines health as a state of complete physical, mental and social well-being and not merely the absence of disease or infirmity. Think of that. Perfect health. Can perfect health be compatible with any genetic weaknesses like mine? It can’t. WHO’s bylaws obligate this UN agency to support the development of diagnostic techniques and therapies that can make people healthier, so it is only a matter of time and research before the agency promotes gene editing tools such as CRISPR/Cas9. After all, gene editing is just another tool of evidence-based preventative medicine, which fits into its mission.

2. It looks like it is far cheaper to begin with a healthy embryo from IVF+PGD, or to create one through IVF+CRISPR+PGD, than to provide lifelong treatment to a person born with certain genetic problems or weaknesses. Jiankui He and his team offered $40,000 in medical services for the children born through this procedure. The other costs are not revealed, but we know that an initial cycle of IVF+PGD usually costs around $20k, while the application of CRISPR/Cas9 to target a specific gene can cost another $10k. So, it is highly possible that the overall cost of the procedure was around $70k, which sounds expensive. However, according to the Centers for Disease Control and Prevention, the lifetime treatment cost of an HIV infection is estimated at $379,668 (in 2010 dollars), which can be considered the amount of money saved by preventing an HIV infection. We are not only discussing money; we are talking about avoiding unnecessary human suffering on a large scale. According to WHO, there were around 37 million people with HIV in the world in 2017, and around 60% of them were receiving treatment for it.

3. Nature makes life forms adapt to the environment. The epidemic of AIDS we see now is likely not the first one in human history. This is why the European population already has some share of people resistant to HIV, which inspired the Chinese researchers to edit the corresponding CCR5 gene. Therefore, nature would do the same thing that the researchers are doing now but with a greater number of mistakes and failures (because nature cannot pick one gene and edit it – it must wait for a mutation to accidentally occur and then wait for the carrier of this gene to survive to prove its usefulness), and this process takes millions of years. Does it really make any sense to wait if there is a way to speed up progress?

Conclusion

This procedure still has risks and potential negative consequences for children, and there are still perfectly valid concerns, such as increasing the inequality that can currently be linked to health and intellectual capacity. However, the remedy for these concerns is not to stop medical studies or to close regenerative medicine clinics; instead, it is to work on resolving these issues more actively.

I hope that we have learned our lesson from a setback in gene therapy after the Gelsinger case, in which a young man died during clinical trials of a gene therapy aimed at curing his OTCD, a disease that prevents the body from processing nitrogen in the blood. Years and years of progress in gene therapy development were lost due to the public overreaction that followed. Individual adverse reactions happen, and yes, they are often unpredictable, so no one can make clinical trials absolutely safe. It would not be wise to repeat this mistake by condemning a pioneer just because he had the luxury – or the burden – of actually becoming the first to perform a study.

About the author
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Elena Milova

As a devoted advocate of rejuvenation technologies since 2013, Elena is providing the community with a systemic vision how aging is affecting our society. Her research interests include global and local policies on aging, demographic changes, public perception of the application of rejuvenation technologies to prevent age-related diseases and extend life, and related public concerns. Elena is a co-author of the book “Aging prevention for all” (in Russian, 2015) and the organizer of multiple educational events helping the general public adopt the idea of eventually bringing aging under medical control.
  1. December 7, 2018

    Very well stated!

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