Genetic counsellors can expedite patient care and influence how other medical specialists use genomics. Photo: Melbourne Genomics
Genomics is now used to predict risk, diagnose disease and inform treatment and care. But the demand for genomic expertise has already outstripped the workforce capacity of clinical genetics services.
To ensure patients get appropriate care, genomics expertise will need to be embedded into all relevant specialties. A new study in the European Journal of Human Genetics shows how genetic counsellors can play a critical role in this process.
Genetic counsellors are allied health professionals who support people and families who may have health conditions with a genetic basis. While they can work across many areas of health, genetic counsellors have traditionally been based within clinical genetics services.
The study interviewed 12 genetic counsellors as they transitioned into new roles within non-genetic specialties such as neurology, nephrology, transplant, cardiology and haematology. These roles were funded through the Melbourne Genomics Health Alliance.
Genetic counsellors can expedite patient care.
The genetic counsellors interviewed worked in different ways, depending on where they were based. Some saw patients directly, while others supported medical specialists who did their own consultations.
Regardless of how they worked, genetic counsellors expected their presence in specialist clinics could significantly decrease wait times for patients to get genomic testing and results. One counsellor reported a reduction in wait times from six months to just two weeks.
There are differing views on 'mainstreaming' genomics.
The genetic counsellors had varied – and sometimes contrasting – definitions of ‘mainstreaming’. Some saw it as an end state where medical specialists practiced genomic medicine as independently as possible; others believed genetic counsellors would always play a central role.
There was, however, broad consensus that models of care would continue to evolve, and that genetics services would increasingly focus on complex rather than everyday cases.
Relationships are crucial when establishing new ways of working.
Unsurprisingly, genetic counsellors felt that the approach of their non-genetics colleagues was vital to success.
Some observed that tensions could arise due to the differing priorities placed on some aspects of genetic healthcare – such as informed consent for testing, or identifying family members of patients who may also benefit from testing. Some also described a hesitancy among some medical specialists when it came to incorporating genomics.
Building relationships between genetic and non-genetic specialists was seen as crucial. Genetic counsellors felt it was important to work with everyone in the clinic, both to clarify the scope of their role and ensure patients got high-quality care. They talked about the value of curiosity and the ability to make helpful suggestions as problems arose.
Peer connection remains vital.
Ongoing connection with other genetic experts remained important for both professional and emotional support. Genetic counsellors said that networking with each other helped overcome feelings of isolation in an unfamiliar clinical environment, while also enabling them to share their own experiences and navigate their evolving roles.
Read the full paper by Trang Do, Melissa Martyn, Belinda McClaren, Alison McEwen and Clara Gaff.