The Cost Of A Human Life by Joshua John

An exploration into modern-day concerns on genetic screening

This article is from the equity heathcare and bio quest partnership

As expected, this raised objection from scientists globally, most notably the PGC (Psychiatric Genomic Consortium, whose data was used to determine Orchid Health’s risk estimates) as their “goal is to improve the lives of people with mental illness, not stop them from being born”. Concerns arise when speaking of the future use of polygenic risk scores in genetic screening. With increasingly more accurate technology and data analysis, will society be able to accurately predict characteristics (not just diseases) of each embryo? Some also argue that the financial implications of this treatment may further increase the inequality divide whilst also putting a cost on the difference between a healthy life and life of a sufferer of a genetic disorder (e.g., polydactyly). This implies the suffering of people with genetic disorders is quantifiable to a grand sum of £2500, thus further raising ethical issues as that clearly disregards the physical and psychological impact a genetic disorder can have on the sufferer and the people around them. Proponents of this research (like geneticist Mark Daly) argue that the point of genetic research should be to understand the ‘mechanisms of disease’, allowing for the discovery of new treatments to combat genetic disorders. A study in the Delaware Journal of Public Health supports this view of genetic screening, citing how understanding of the pathway of Pelizaeus  Merzbacher disease helped create 'novel gene therapies’ to stop the spinal muscular atrophy associated with this genetic disease.

To conclude, it is clear to see that genetic screening is a tool that can be used to effectively treat many genetic disorders and improve the lives of countless sufferers. However, in the words of Andrew McQuillin (a researcher at PGC), ‘Society must soon have a broader discussion about the implications of this type of genetic screening’, due to the worrying ethical dilemmas that arise from paying for whole genome sequencing.

Keywords:

Mutations: A change in the gene in the genetic sequence Homozygous: Having two identical alleles of the same gene Phenotype: The set of observable characteristics resulting from a specific genotype

Eugenics: a study on how to pass down desired characteristics within a human population. This ideology was used in Nazi Germany to justify their massacre of minority groups like Jews and the Romani.

 Genome: The entire set of DNA in a cell

Centrifuged: A process that uses centrifugal forces to separate substances of different densities