IVF Embryo Screening Debate Intensifies as Genetic Data Access Reveals Potential for Trait Selection
London, UK – A growing ethical and legal debate is unfolding around IVF treatment in the UK, sparked by patients’ increasing access to detailed genetic data generated during routine embryo screening. While current regulations strictly limit testing to serious genetic diseases,the data itself - created during aneuploidy screening – holds the potential to predict a range of traits,raising concerns about “designer baby” scenarios and the premature application of unproven technologies.
The controversy centers on polygenic screening (PGT-P), a technique that aims to assess an embryo’s predisposition to conditions and characteristics like height, intelligence, and even risk of certain diseases. Currently illegal for use in embryo selection within the UK, PGT-P relies on analyzing an embryo’s genome – a sequence routinely generated during preimplantation genetic testing for aneuploidy (PGT-A), a standard procedure to check for missing or extra chromosomes.
While IVF clinics only receive a simple “yes/no” result regarding chromosomal abnormalities, patients now have a legal right, under GDPR and the Data Protection Act 2018, to access the full underlying genetic data. This access unlocks the possibility of using commercially available algorithms to generate predictive scores for a host of traits.Several US companies already offer these health and IQ prediction services.
Traits like height and intelligence aren’t steadfast by single genes, but are partly heritable, influenced by thousands of genes interacting with each othre and the environment. Scientists have developed algorithms that analyze vast genetic databases to assign probabilistic scores for these complex traits. An embryo predicted to have a higher risk of developing diabetes, for example, isn’t guaranteed to develop the condition.
Advocates argue that parents should have the autonomy to utilize technology that could possibly offer health benefits to their future children.Though, significant concerns remain about the accuracy and validity of these predictions, particularly when applied to embryo selection.
“Polygenic scores are typically very crude and only capture a tiny fraction of the heritable component of complex traits like IQ,” explains Prof. Frances Flinter, of Guy’s and St Thomas’ NHS foundation trust and a member of the Human Fertilisation & Embryology Authority (HFEA). “A major concern of geneticists is that the use of PGT-P represents premature adoption of inadequately validated tests.”
Currently, UK regulations permit testing for approximately 1,700 single-gene disorders, including Huntington’s disease, cystic fibrosis, and sickle-cell disease. The HFEA maintains a firm stance against polygenic screening for non-medical traits, emphasizing the need for robust scientific validation before such technologies are considered for clinical use.
The debate is expected to intensify as genetic sequencing becomes even more affordable and accessible, forcing regulators to grapple with the ethical implications of increasingly powerful genetic technologies and patient rights to access their own medical data.
