Reflections by Anna Middleton
Wellcome Connecting Science
Professor Anna Middleton's reflections how genomic technology is sweeping across society and the importance of the role of genetic counsellors.
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 clinical 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. Research coming out of the Society and Ethics Research group at the Wellcome Genome Campus, from how to both counsel and illustrate transgender people on family trees in a culturally sensitively and inclusive manner, to whether an element of genetic counselling can be automated via chatbot technology in order to keep up with growing demand, to how doctors should balance duties of confidentiality with duties to warn, genetic counsellors will play a vital role in shaping the future of healthcare in the genomic era.
Professor Anna Middleton
Head of Society and Ethics Research
Wellcome Genome Campus