Genetics has become increasingly relevant in a clinical setting ever since the birth of the first baby through in-vitro fertilization (IVF) in 1978. IVF embryos can now undergo preimplantation genetic diagnosis to screen for genetic risk of various diseases, and in 2020 a girl was born from an embryo that was selected using this screening technology. To many this was a significant advance in assisted reproduction, as embryo screening can identify gene variants associated with harmful diseases such as breast cancer, heart disease, and diabetes. The popularity of genomic profiling companies like 23andMe has shown that people nowadays have a growing interest in the genetic makeup of themselves and their families. Besides risk of disease, gene variants that are associated with hair and eye colour, complexion, and other cosmetic traits have also been identified and can be screened for.
This leads us to the question: instead of selecting an embryo with a preferred genotype, what if you could manually add or remove genes of your choice? Using genetic engineering technologies like CRISPR-Cas9, it could be possible to edit the genomes of human embryos in any way one sees fit. By this method, parents wouldn’t have to choose the best-available embryo for their child, they could pick their desired traits from a provided menu for their ideal “designer baby”.
Designer babies may seem like a concept from the distant future, but in 2018, the world was introduced to Lulu and Nana.
One year earlier, Chinese scientist He Jiankui recruited a couple who had attended a conference held by He and were seeking IVF. In secret, He performed IVF with their donated eggs and sperm and edited the genome of the resulting embryo to disable a gene, CCR5, that enables HIV to enter cells. While He’s goal was to prevent the twins from being susceptible to HIV, it isn’t known whether he succeeded. When news of the pregnancy started to come out, He posted a series of videos on YouTube outlining his experiment, saying the birth went well and the girls were healthy. Immediately, He received backlash from the international research community, with many prominent scientists condemning He and his experiment. Bioethicists criticized He’s attempts of secrecy from colleagues, the dishonest way he obtained consent from the couple, and his disregard for the health and safety of Lulu and Nana. He was later convicted of forging documents by Chinese authorities and sentenced to three years’ imprisonment.
Designer babies are an ethical nightmare for many who foresee the potential social consequences. Germline modification could lead to genetic discrimination against people without modifications or whose parents couldn’t afford them. While it could be a useful tool for eliminating debilitating diseases, humanity has a history of using genetics to justify unethical ideas. Discussion of “good” and “bad” genes is a slippery slope that leads us back to the eugenics movement of the early 20th century. Even today, gender-specific abortion is common in some countries with a cultural preference for boys. Above all, the potential for harm seems to outweigh the potential benefit that germline engineering brings. Making inheritable changes to the genome of children using technology still in its infancy is irresponsible in the wrong hands. Human genetic engineering is illegal in most countries, and the debate over its morality is ongoing. There is still a huge gap in information behind how human traits are controlled by genes, so for now designer babies remain in the realm of science fiction. Germline modification may one day be a useful tool for disease prevention, but care needs to be taken so that desires for human enhancement don’t contribute to further inequality in society.
- Ball, P. Designer babies: an ethical horror waiting to happen? The Guardian(2017).
- Ball, P. Polygenic screening of embryos is here, but is it ethical? The Guardian(2021).
- Cyranoski, D. The CRISPR-baby scandal: What’s next for human gene-editing. Nature 566,440–442 (2019).
- Ishii, T. Germline genome-editing research and its socioethical implications. Trends in Molecular Medicine21,473–481 (2015).
- Lanphier, E., Urnov, F., Haecker, S. E., Werner, M. & Smolenski, J. Don’t edit the human germ line. Nature 519,410–411 (2015).
- Lencz, T. et al.Utility of polygenic embryo screening for disease depends on the selection strategy. eLife10, (2021).
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