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Lucinda

Lucinda Freeman

Year of Award: 2016 Award State: New South Wales
To gain a strong evidence base for counselling patients about whole genome testing - USA, UK
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Recommendations

This paper recommends that the utilisation of Genetic Counsellors be recognised as integral to the implementation of a genomic strategy at a national, state and local level. The core skill set of Genetic Counsellors, including their ability to communicate complex information and empathise with their clients, will ensure that any genomic testing remains patient focused, ethical and equitable across the country.

Specifically, this paper recommends that:

  • Each discipline within a tertiary hospital should employ a Genetic Counsellor to assist with patient care
  • Funding opportunities be created and enhanced for Genetic Counsellors to build a body of evidence on the needs of the Australian population for genetic testing
  • Genetic Counsellors take on a key role in advocating on behalf of patients having access to genomic technology. This includes promoting the availability of preconception screening to reduce disease burden and enhance patient autonomy in reproductive decision-making. 

Genetic Counsellors as an agency need to better promote themselves and their services to the wider medical field and also the general population. Using social media will be an important point of access for promoting the role and encouraging communication within the field.

There is also an emergent role for Genetic Counsellors in commercial endeavors in the field of genomics to promote evidence-based and ethical practice in genomic testing. Genetic Counsellors have an important role to play in ensuring that organisations practice within an ethical framework and maintain patient-focused care.

Genetic Counsellors should continue to build a body of outcome-focused research to provide evidence for the benefits of genetic counselling. Research should focus on both the intervention used and the impact on the patient and their family. This paper also recommends establishing a Statewide Genetic Stewardship Program to ensure equity of service and promote best practice in the ordering of genomic testing as genomics is integrated into mainstream medical practice. Utilising the skill set of Genetic Counsellors will ensure families are followed up as well as the individual patient. This will include:

  • Developing an online requisition form with built in pop-ups to enhance conversations between specialists, Genetic Counsellors and patient. The enhancement should include a focus on secondary findings and managing patient expectations.
  • Appointing a lead Genetic Counsellor within local area health districts who manages local requests and builds relationships with non-genetics clinicians to maximise the utility of genomic test results.
  • Addressing the education needs of non-genetic specialists should be enhanced and run in combination with the Stewardship Program 

The final recommendation from this project is to explore options for improving family communication, an issue that arose in both the UK and US. As genomic testing becomes more common in preventative health, Genetic Counsellors have an important role in enhancing the communication between patients and their families. Specifically, there is scope to improve services to better assist families to understand the familial context of their results and how they can share this with families. Alongside service development a second project on measuring outcomes of increasing cascade screening and family communication utilising behavioural psychology would be beneficial to the field of genetic counselling.