Genetics testing start-up offers to 'genetically optimise' babies - but is it ethical?

Key Concepts

• Embryo Screening for Inherited Diseases: A process to identify genetic disorders in IVF embryos.
• PGT-M (Preimplantation Genetic Testing for Monogenic/Single Gene Defects): A type of embryo screening for specific inherited diseases.
• Complex Inherited Disorders: Conditions influenced by multiple genes and environmental factors (e.g., autism, ADHD, intelligence, height).
• Polygenic Risk Scores (PRS): Statistical estimates of an individual's genetic predisposition to a trait or condition, based on the combined effect of many genes.
• Eugenics: The practice or advocacy of improving the human species by selective breeding, often with the aim of eliminating undesirable traits.
• AI and Machine Learning in Genetics: The use of artificial intelligence and algorithms to analyze complex genetic data and identify patterns.

Embryo Screening: Current Practices and Controversies

The concept of screening IVF embryos for fatal or life-limiting inherited diseases is not new and is offered by many clinics. This practice is legally permitted under the UK's restrictive regulations, provided certain requirements are met. In contrast, the US has no such regulations. While US clinics routinely screen for simple inherited diseases from parents, a company named Nucleus Genomics is extending this to screen for more common conditions, including traits like autism, ADHD, eye color, height, intelligence, and lifespan.

This expansion into screening for complex traits has drawn significant criticism, with some experts in human genetics labeling it as a form of "corporate eugenics."

Company's Perspective: Empowering Parents with Information

Keon Sardiggy, the founder of Nucleus Genomics, defends the company's offerings by stating, "I think what we do is we give parents more information on their embryos. Genetics is one tool parents are going to use to give their child the best start in life but it's one of many tools." He argues that the definition of "best" is subjective and lies "in the eye of the parents." Sardiggy suggests that using advanced science to reduce disease risk or predict traits like height is a valid application of technology.

Scientific Limitations and Dubious Claims

A significant challenge raised by critics is the current scientific capability to confidently select for complex traits like intelligence, height, or even conditions like autism. These traits are influenced by hundreds or thousands of genes, as well as numerous environmental factors that play a role throughout development and adulthood.

As a result, the most that can be achieved with current genetic science for these complex traits is a "statistical overview." While companies like Nucleus Genomics claim to provide genetic counseling to explain the information provided, many human geneticists consider the idea of confidently choosing outcomes for intelligence or height to be "dubious." This skepticism stems from an insufficient understanding of how these complex traits manifest from embryo development to adulthood.

The Role of AI and the Future of Embryo Selection

The transcript acknowledges that genetic science is rapidly advancing, particularly with the development of AI tools and algorithms that assist scientists in identifying complex patterns within human genetics. This raises the question of whether society is heading towards a future where such selections become more feasible. Companies like Nucleus Genomics are positioned as drivers of this advancement, pushing the boundaries of what is currently possible.

Conclusion: Navigating Ethical Boundaries

The discussion highlights a fundamental tension between the potential of genetic technology to provide parents with more information and the ethical concerns surrounding its application, particularly in the realm of complex traits. While the science is evolving, the current understanding of polygenic traits and environmental influences makes confident selection for characteristics like intelligence or autism highly questionable. The debate centers on whether the boundaries being pushed by companies like Nucleus Genomics are ones that society truly wants to see crossed, given the potential for misuse and the historical implications of eugenics.