Genomic technology is sweeping across society. 2016 was declared “Generation Genome” by the UK’s Chief Medical Officer, Dame Sally Davies, who said in her opening statements of that year’s annual report: “Genomic medicine has the potential to save costs and improve quality of care by targeting treatment, maximising benefit and reducing side effects. For patients with rare diseases, it can shorten their ‘diagnostic odyssey’ helping to identify therapeutic options faster and improve outcomes.”
With the explosion of availability of genetic testing, both in healthcare settings and via the consumer market through companies such as 23andme and Ancestry.com, genomics is officially now relevant to all of us. Even if you choose to never partake in genetic testing yourself, the moment a biological relative has, information you are linked to becomes available in a database somewhere. The transition into the genomic era means that the definition of what constitutes a “patient” will likely have to shift as well, from the individual to the biological family.
Genetic counsellors are specially trained in how to make sense of a genetic test and how these tests impact a family. As a healthcare profession whose practitioners have expertise both in clinical genetics and in counselling, genetic counsellors have a distinct point of view on the genomic healthcare revolution taking place in the UK and elsewhere. They are responsible for "breaking down the jargon" of the genetic science while simultaneously providing their patients with very nuanced, patient-led counselling that accounts not only for the person sitting in their clinic room, but also that persons' biological family members who may also be impacted by the genetic information.
"Voices of Genetic Counsellors - So Much More Than Just a Test" features four genetic counsellors from across England recalling particularly difficult cases they have dealt with in their careers, which have left a lasting impact on them.