A Designer baby: What is it?
A baby whose genetic makeup is edited by altering or removing a particular gene responsible for a disease is a designer baby. This can be done by either introducing or editing a specific gene directly in the embryo or the sperm or egg cells of the parents. However, editing embryos raises ethical concerns as the genes can be passed onto generations. Some scientists suggest gene editing only in cases of diseases.
Taking to Instagram, Dr. Sermed Mezher, MBChB (Hons), MRes, UK, shared his opinion on “designer babies." He started the video by saying that “most people think that making designer babies is wrong, but this case may just make you think twice.” In the video, Dr. Sermed discussed how a Chinese scientist, He Jiankui, edited out the CCR5 gene, which HIV uses to gain access into the cells, making the children virtually immune to the virus, which led to the birth of the first genetically modified kids in 2019. The scientist decided to edit the gene after the father of the twins was HIV positive and the parents were concerned about the same being transferred to their children. As the scientist was worried about the ethics surrounding it, he met his idol, Dr. James Watson, a Nobel Prize-winning geneticist, at a conference, and Dr. Watson replied to him to “make people better.”
Dr. Sermed Mezher, along with the video, posted a caption that read: “Gene editing on humans raises profound ethical concerns, touching on issues of consent, equity, and the fundamental nature of human life. While the potential benefits of gene editing, such as eliminating genetic diseases and enhancing physical and cognitive abilities, are significant, the ethical implications cannot be overlooked.”
GENE EDITING:
Germline editing:
Germline editing is a process where a genome is edited in germ cells, either in an oocyte, sperm, or embryo, following which the edited genome is carried in the baby. In the germline process, either a new gene is incorporated into the genome or replaced with another gene, or an uncharacteristic gene is removed. Germline editing is the process by which He Jiankui first developed genetically modified babies.
CRISPR/Cas9:
It is a technology where a bacterial antiviral CRISPR/Cas system is used for genome editing. The bacterial system recognizes the viral nucleic acid sequence, edits out the sequence and damages the virus. The CRISPR/Cas system has two components: the Cas9 nuclease and a guide RNA (gRNA). The two components, when introduced into the cell, bind to form a complex, and cas9 undergoes a conformational change, which allows it to cleave the targeted sequence, causing a double-strand break (DSB). The resultant DSB can now be repaired by 2 mechanisms:
Non-homologous end Joining (NHEJ) involves the insertion of a functional gene or deletion of the disrupted gene.
Homology-directed repair (HDR) involves introducing DNA with a desired sequence into the genome.
CRISPR/Cas9 is an effective way of modifying the genome. It is carried out in vivo in animals and in vitro in human cells, but genome editing in embryos or germ-line cells is not considered safe. One limitation of CRISPR/Cas9 is that the double-strand break can often bind to other parts of genomes, resulting in off-target effects that can cause mutations in the other cells of the embryos.
Timeline of CRISPR/Cas9 Regulations:
2015: The International Summit on Human Gene Editing was held in Washington, D.C., by scientists from China, the UK, and the US. It was concluded that genome editing would be done only on somatic cells using CRISPR technology under the FDA, but germline editing shouldn’t be carried out.
2016: A license was given to carry out editing in embryos to determine the early development to the scientists of the Francis Crick Institute in London.
2018: Chinese scientist Jiankui conducted human genome editing on germline cells of the embryos. After this, his research activities were suspended, and more stringent regulations were imposed on genome editing using CRISPR technology.
2020: By law, about 24 countries, and by guidelines, 9 countries have prohibitions on germline gene editing.
The Oviedo Convention, in its article 13 "Interventions on the Human Genome," states that "An intervention seeking to modify the human genome may only be undertaken for preventive, diagnostic, or therapeutic purposes and only if its aim is not to introduce any modification in the genome of any descendants."
Ethical concerns:
Even though genome editing is beneficial, it can bring many ethical issues that need consideration. The various ethical issues that can be encountered are:
Informed consent: as genome editing involves altering the germ cells, it can change the embryo so the changes can be carried through to the next generations, and there can be no consent from the future generations.
Safety and efficacy: genome editing carries its risks along with the benefits as explained above. While editing, there can also be off-target effects, which can bring about mutations and lead to unintended outcomes. Genetic mosaicism is another risk.
Equity and access: though common among the healthcare system. Gene editing treatment is very expensive, and those who can afford it can only benefit from it. It creates an imbalance in the ecosystem where the poor continue to suffer and the rich continue to gain the upper hand.
Enhancement vs Therapeutic: if genome editing is used for treating or correcting diseases, then it is viewed as ethical, but if it is used to enhance physical or cognitive traits, then it raises serious moral concerns.2
Medical Professionals' Perspectives:
MedBound Times connected with Dr. Gauri Ghatnekar Desai for her opinion on the concept of designer babies.
The real concern surrounding designer babies isn’t about the technology or scientific possibility itself (such as gene editing). It is human nature that worries everyone—the fear that people might misuse this technology for unethical or selfish purposes. ‘Designer babies’ as a concept barely scratches the surface. Like any other scientific concept, it is bound to receive skepticism. Germline gene editing has the potential to improve human health and eradicate genetic disorders significantly, but it’s also a delicate topic that needs careful handling. However, things can change if positive outcomes are showcased. Unfortunately, some unethical, unsupervised experiments have cast a negative light on the field and intensified mistrust of the subject. Without giving a fair chance, this science might fade away despite its lifesaving possibilities. The right (and strong) legal and policy safeguards can pave the way for progress.Dr. Gauri Ghatnekar Desai, dentist, PG diploma in Emergency Medical Services, healthcare writer.
Speaking exclusively to the MedBound Times, Dr. Ayesha Asif Ali shared her views on the topic.
A world where all the genetic flaws suddenly disappear, causing people to live longer and healthier lives. Pretty much sounds like a superpower, doesn’t it? CRISPR made it possible to rewrite the genetic script, turning tragedies into stories of sheer hope and survival. Indeed this breakthrough deserves all the applause of the world. But sure as we go deep into it , it gets tricky. The original survival game—EVOLUTION is an age-old process that keeps life adapting to the events in the ever-changing world. With genetic designing, we're talking about taking control of the narrative, and editing genes to save lives which medically seems like the obvious choice but makes a morally and ethically grey scale window. The tailoring traits go beyond health—such as intelligence, physical appearance, or even emotional traits. Undoing the survival of the fittest; it's becoming more as the survival of the richest. The fine line between necessary medical intervention and the pursuit of genetic perfection is blurred. WHO GETS TO DECIDE WHAT’S ACCEPTABLE AND WHAT’S NOT? While gene editing holds incredible promise to better lives, it also carries the heavyweight of ethical dilemmas that challenge us to consider not just what we can do and what could be done, but what we should be doing.Dr. Ayesha Asif Ali, Clinical Pharmacist
What can be done for the ethical concerns:
Ethical guidelines and frameworks must be created.
Based on the opinion of scientists, geneticists believe transparent ethical guidelines should be created and internationally strengthened.
Most importantly, the ethical implications of genome editing should be discussed with the public, and open dialogue should be encouraged to create public awareness.
A global UN regulatory body should be established for the safe and ethical conduct of experiments, such as genome editing.
International collaboration between organizations to promote joint research and ethical standards.3
REFERENCES:
1. Wikipedia contributors. (2024b, September 14). Designer baby. Wikipedia. https://en.wikipedia.org/wiki/Designer_baby
2. Salib, V. (2024, April 22). Exploring 10 ethical considerations in genome editing. Pharma Life Sciences. https://www.techtarget.com/pharmalifesciences/feature/Exploring-10-ethical-considerations-in-genome-editing
3. https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(23)01084-X/fulltext