In search for a perfect baby, early adopters do not shy away from using unproven genetic screening technologies.
In a recent article in the UK’s Daily Mail, Rafal Smigrodzki, father of Aurea, the first baby born after polygenic embryo screening, states that it is a parent’s responsibility to ensure "the best possible genetic health outlook" for their child. Amidst ongoing debates on the ethical and social implications of PGT-P (pre-implantation genetic testing for polygenic disorders), he defends his own procreative choice with the following statement: "I see the diversity argument as especially immoral. It would be wrong to increase “diversity” by randomly removing adults’ limbs or eyes. It would be wrong to increase the diversity of smiles by randomly denying some adult people access to dental care. By the same token, it would be wrong to deprive some future people of good health by denying them proper genetic care before they are born."
Even if Smigrodzki’s statement sounds like a provocation to many, it outlines the logic of parents who can pay for expensive IVF treatments and would love the opportunity to select an embryo with a superior combination of genes. The birth of Aurea from an IVF embryo pre-screened for genetic disorders is not only a living proof of the potential of genomics for reproductive medicine, but an example of how the adoption of new technologies happens long before scientists, policymakers and social advocates have reached a consensus on the benefits or disadvantages of a given innovation.
As demonstrated in a recent study by Kalina Kamenova (Founder and Director of the Canadian Institute for Genomics and Society) and Hazar Haidar (Assistant Professor at the University of Quebec at Rimouski), the jury is still out on the utility and ethics of polygenic embryo screening (PES). Based on their content analysis of media and expert discourse on human-enhancing genetic technologies, the authors discover that the overall sentiment towards the use of PES in 2021 was primarily negative. The tendency of academic experts and science reporters towards caution describes a marked shift in attitude that was neutral prior to the actual deployment of the technology. With the birth of Aurea, awareness of unresolved questions regarding the application of PES has heightened. The review of bioethics literature completed by Dr. Kamenova and Dr. Haidar zooms in on the following ethical questions: "1) Will predictive genomic testing determine the expectations of the parents for their future child?; 2) How does the selection of a genetically superior embryo affect the identity and life of the future child?; Are we headed towards a new eugenics that will establish to new social hierarchies and normalize genetic-based discrimination?".
Pointedly, the most discussed issue by both experts and reporters (72 percent of all articles in the study sample) is the prediction accuracy of polygenic risk scores and the uncertainties regarding the utility of these tests in embryo screening. In other words, there is still significant reservation regarding the capacity of this emerging technology to fulfill promises made by unregulated genetic testing providers. In the meantime, as it often happens, the first and most eager adopters of cutting-edge technologies have become part of their testing procedures.
Click on the link for access to the entire study: The First Baby Born After Polygenic Embryo Screening | Voices in Bioethics (columbia.edu)