Turning patient stories into hope and resilience
One of the main reasons people seek a genetic test is to establish some certainty over their potential risk of an inherited condition, and in many cases certainty over how they choose to proceed with making plans for starting a family.
However, as genetic testing become more mainstream in general clinical practice, certainty over risk will inevitably introduce uncertainties around the future, particularly with respect to the interpretation of results, further testing needs, and wider family impact.
This places uncertainty at the core of a relationship between a patient and their genetic counsellor. Therefore, fundamental to a genetic counsellor’s toolkit, is the ability to get patients to understand how they can gain control and foster resilience, by finding the certainties that reside in the uncertainties.
Jonathan Roberts – Researcher for the Wellcome Genome Campus Society and Ethics Research Group
“A real challenge for genetic counsellors is helping patients adjust to uncertainty…fostering resilience to that.”Jonathan Roberts – (Pre-registration genetic counsellor at Addenbrooke’s Hospital, Cambridge, and researcher for the Wellcome Genome Campus Society and Ethics Research Group.
Whilst advances in technology have enabled a valuable medical transition from individual gene sequencing to whole genome sequencing, this significant benefit to mankind is hindered by the reality that clinical practice isn’t ready to deal with the deluge of expectation around the interpretation of those results, and the ethical dilemmas that will present in the wake.
This is why the widespread implementation of genetic counselling services is so essential to genomic medicine and clinical practice. By introducing their innate skills in both emotional and cognitive empathy, genomic medicine can be allowed to achieve its full potential in providing the information necessary to enable patients and their families to make difficult decisions, and move forward constructively with hope and resilience.
In the latest instalment of our ‘Voices of Genetic Counsellors’ video series, created by members of our Wellcome Genome Campus Society and Ethics Research team, and in partnership with the Association of Genetic Nurses and Counsellors, we hear from Jonathan Roberts (Pre-Registration Genetic Counsellor at Addenbrooke’s Hospital, Cambridge and researcher for the Wellcome Genome Campus Society and Ethics Research Group).
Jonathan shares his insights into the challenges genetic counsellors face in helping patients adjust to uncertainty. Drawing on his research interests in people and their stories, as part of his work with the WGS Society and Ethics Research Group, (Connecting Science), he discusses the vital importance of taking the time to consider each patient individually. He highlights the significance of delving into a patient’s background to understand more acutely about the triggers for their very personal emotional response to a genetic test result, and how to tailor counselling effectively to empower each patient to foster reliance against their own particular sets of anxieties.
The relevance of patient life stories on their response to genetic test results is brought to life through one of Jonathan’s most poignant experiences, working as a genetic counsellor. Through the story of one young woman in her thirties being tested for the BRCA1 gene, we discover the deep impact her involvement in her mother’s end of life care placed on her own concerns about the possibility of also carrying the gene that ultimately led to her mother’s early death.
We also see how through appropriate counselling, and empathic understanding she was able to form a positive mind-set that enabled her to see that certainty over whether she was a carrier of the gene, would allow her to tackle her existing anxieties and fears, and have control of her life and future decisions.
Watch the video below, or visit our YouTube Channel.