As genomic medicine advances, the possibility of manipulating our genetic makeup, and that of our future children, is rapidly becoming a reality. But, even if we could edit out genetic disease, does that mean we should?
The launch of the 100,000 Genomes Project by the government in 2012 is part of a wider trend to launch whole-genome sequencing into mainstream healthcare. Whole genome sequencing - the examination of a person's entire DNA sequence - is set to drastically alter the ways we approach health and disease. By providing detailed information about a person's genetic constitution, genome sequencing has the potential to explain both current health problems as well as forecast future ones. This may be through identifying susceptibility to late-onset diseases, such as Alzheimer's disease, or revealing our "carrier status" for inheritable conditions - that is, conditions we unknowingly carry in our genes that we could pass on to our children.
Starting to become a reality
Genome sequencing appears set to eventually become a standard part of pregnancy planning. Private genetics companies already use the techniques to screen couples for large numbers of genetic conditions simultaneously, before the female partner even becomes pregnant. If the couple is found to be at risk of passing on a genetic condition, they are offered various interventions to prevent the birth of an affected child. It is anticipated that embryo genome editing techniques - techniques to remove disease-causing genetic mutations - might one day be among these interventions.
While genome sequencing on a mass scale is now largely feasible, important questions are yet to be answered about the ways they could, and should, be used. One group whose voices have been underrepresented in these debates are those of people already living with genetic disease.