The very first designer baby was Adam Nash. Born in the 2000s, Nash was ‘designed’ in a petri dish in a lab to save his sister. His sister was born with Fanconi anemia, a rare and dangerous genetic disease that required a donor for her stem cell therapy. The solution devised by the parents and doctors was to conceive Nash so that the umbilical cord blood containing stem cells could be utilized to treat his sister.
During his in vitro conception, Adam was screened to make sure he didn’t have the disease and could serve as a donor. The plan worked, and Adam saved his sister, becoming the world’s first designer baby in the process. But what exactly are designer babies?
The term refers to an in vitro, genetically ‘designed’ baby. Genetic methods are employed to modify or alter certain genes in the baby’s genome, most often to avoid disease, but the method can in theory also be used to favor some traits like intelligence, height, gender selection, etc.
Before advancements in the fields of in vitro fertilization and genetic engineering, designer babies were considered little more than a sci-fi project. But rapid progress brought them into reality and by the early 2000s, designer babies started to trigger spirited debates regarding both the biology and the ethics of the practice.
It’s already happening
In one sense, genetically modifying a child with particular traits is already done on a fairly large scale. Couples with infertility problems have long been utilizing IVF technology to conceive, and one of the perks of IVF is screening and selection of the desired embryo prior to implantation.
For instance, pre-implantation genetic diagnosis (PGD) is employed to screen embryos for multiple genetic characteristics before their implantation in the mother. PGD can show whether the embryo carries genes responsible for conditions like sickle cell anemia and cystic fibrosis. PGD is nowadays considered a reliable method for the selection of traits.
But there’s another side to the prospect of genetically engineered IVF babies. As techniques become more advanced, they could entice would-be parents to engineer their babies. For instance, the gene-editing approach known as CRISPR-Cas9 can edit DNA with a single nucleotide precision utilizing a bacterial enzyme (Cas9). Thanks to CRISPR-Cas9 and other modern gene-editing technologies, we are now able to remove the mutated disease-causing genes – which might prove beneficial after a safety trial in humans. But going from that to actively trying to improve babies’ genetic material is just a step away.
The concept of Frankenstein’s monster still haunts people and many are against this procedure, fearing that it would lead to unnatural, engineered societies. There are strict legal restrictions on genetic alteration of the human genome in several countries. The medical research community has essentially banned the use of CRISPR-Cas9 in genome editing and human reproduction. But it’s still happening to some extent.
China has already been utilizing CRISPR-Cas9 to genetically alter unsustainable embryos. A developmental biologist of Francis Crick Institute, Kathy Niaken was granted authorization by Human Fertilization and Embryology Authority (HFEA) to analyze the challenges faced in early developmental stages resulting in miscarriages utilizing CRISPR-Cas9.
Germline engineering, the process by which the genome of an individual is edited in such a way that the change is heritable, is even more controversial.
Even in a medical context, genome editing is sometimes regarded with criticism. Peter Mills, an assistant director of the UK Nuffield Council on Bioethics, says that since the 1970s (when innovations in the field first emerged) there is an unchanged agreement that germline alterations are off-limits. Germ-line modifications are against human decency, says UNESCO’s lead.
Michael Sandel, a member of the US President’s Council on Bioethics says that altering germ-line cells jeopardizes the ‘code of giftedness’. According to him, when we acknowledge our children the way they are, we welcome them as gifts, not as any item of our desire or product of our ambition.
Sandel juxtaposes this idea of giftedness to a parenting style he calls “Hyper-parenting”, which overlooks the talents and desires of children while pushing the child to do what satisfies the ambitions and desires of the parents. A hyper-parent will force his child into playing sports and pursuing a top university, even as the child may want to be an artist or a musician or pursue a more laid-back university.
Now, one may wonder that what hyper-parenting has to do with genetic engineering. Many parents would presumably want to modify the genome of their offspring, but that doesn’t necessarily mean that they are hyper-parents. But some parents would be more inclined than others to “push” their child with every means possible.
A turning point for designer babies?
The next 40-50 years will show us the direction society is ready to take for gene editing in babies, but it won’t be an easy discussion. In the long run, if designer babies become widespread, it could be a social disaster, widening gaps between the rich and the poor to unprecedented levels as the rich are able to use the technique to their advantage while the poor will not.
However, germ-line engineering can be used to tackle social injustices, by offering kids from an underprivileged background a leg up. Like any other tool, gene editing is neither good nor bad by itself — it can be both good and bad depending on how it is used.
This leads us to the scorching ethical debate about what would constitute an acceptable edit. Tampering with the predisposition for genetic diseases is one thing, but what about other physical traits? Is making an embryo more predisposed to physical prowess acceptable? Where do you draw the line? There are few clear answers.
Apart from that, gene editing is a complicated, costly, and pretty dubious way to get what others have long gotten by other means, especially by selecting an embryo containing the gene of interest. Most things you can achieve using gene editing can also be achieved by embryo selection, argues Henry Greedy, a bioethicist of Stanford University. Instead of modifying the embryo, you
Ronald Green of Dartmouth College says that due to the anonymous health perils associated with genetic engineering and lack of public trust, he anticipates a slow down for CRISPR-Cas9 applications in the coming few decades, not only for disease prevention but also for designer babies.
Ultimately, despite so much technological progress, we’re still not sure how to deal with the prospect of designer babies. For now, the risks of gene editing seem to outweigh the benefits, especially when alternatives exist. But in the future, who knows.