Research Genetic Counsellor

The Research Genetic Counsellor will be the primary point of contact for new participants: identifying families who could benefit, building referral pathways with clinicians and patient advocacy groups, guiding participants through consent, and coordinating sample collection. Everything downstream (sequencing, analysis, diagnosis, clinical trials) depends on the recruitment pipeline you will build and sustain. 

You will work primarily with the GRD Registry Program Manager (Jonathan Nguyen) and A/Profs Owen Siggs and Jodie Ingles. The broader team spans multiple co-investigators across clinical genetics, genomics, bioinformatics, and genetic counselling, with established partnerships with patient advocacy organisations, clinical genetics services across NSW, and pathology providers nationally. 

WHY THIS ROLE 

• Direct impact for rare disease families. Every participant you recruit is a family gaining access to advanced research and a chance at a diagnosis they may not otherwise receive. 

• National scale and reach. We recruit participants from every state and territory, and work closely with national patient advocacy groups. You will build and maintain these relationships, and help extend the registry’s reach into under-represented communities. 

• Exposure to state-of-the-art genomic medicine. Including the generation of short- and long-read whole genome sequencing data, and applying the latest analytical tools. 

• Connection to clinical trials and industry. As the registry grows, so does its value as a national entry point for trials, and you will play a direct role in building the recontactable participant base that makes this possible. 

• A growing, well-supported team. The GRD Registry sits within a well-funded research program backed by over $13.5M in MRFF funding across related studies, with a dedicated Program Manager, established governance structures (Steering Committee and Scientific Advisory Board), and strong institutional support. 

• Flexibility to maintain a concurrent appointment. At 0.2 FTE, this role is designed to complement a concurrent clinical or research position. 

Salary: $85,000 (Prorated: $17,000) + 14% super + salary packaging  

Employment Type: 2 year fixed-term contract, part-time (0.2 FTE) 

SNAPSHOT OF BENEFITS 

• Generous salary packaging to save you income tax on your wages thereby boosting your monthly take-home pay (max. $15,900 general expenses + $2,650 meals/accom) 

• Ample opportunities for on-going training and development 

• Stimulating, diverse and highly international research environment 

• Flexible work arrangements e.g. start / finish times  

• 18 weeks paid parental leave for both parents including paid superannuation 

• A range of additional leave types to meet your personal needs including cultural leave, conference leave, community service and study leave 

• Discounted Health Insurance 

• Lifestyle discounts with our community partners 

WHAT YOU WILL DO 

• Drive participant recruitment. Proactively identify and engage potential participants through clinical networks, patient advocacy groups, social media, recruitment events, and direct outreach. Develop and maintain referral pathways with clinicians, clinical genetics services, and public and private pathology providers. Track recruitment progress against targets and adapt strategies to maximise enrolment, including targeted outreach to under-represented ancestral and geographic communities. 

• Lead consent and enrolment. Guide participants and families through the informed consent process, covering genomic research, whole genome sequencing, biospecimen collection, data sharing, recontact for future studies, and management of incidental findings. Ensure all consent documentation is complete, current, and compliant with HREC requirements. 

• Coordinate sample collection. Manage the logistics of saliva and blood sample collection from participants across Australia, including kit distribution, scheduling with pathology providers, shipping to biobanks in NSW and Victoria, and troubleshooting barriers to maximise sample return rates. 

• Maintain participant records and communication. Manage participant data in the registry database. Ensure data quality and completeness. Serve as a point of contact for participants, supporting ongoing engagement, retention, and recontact for future research opportunities and clinical trials. 

• Build community partnerships. Represent the GRD Registry at patient advocacy events, rare disease conferences, and community forums. Contribute to participant-facing communication materials, including resources translated into Mandarin, Arabic, Vietnamese, and Punjabi for under-served communities. 

• Support return of results. Contribute to the communication of clinically relevant genomic findings, and support recontact of participants for research and clinical trial opportunities as they arise. 

• Other duties aligned with the scope and classification of the role as required. 

• Proactively identify, assess, and report operational, financial, and safety risks associated with the duties of this role. The incumbent is required to adhere to the organisation’s Risk Management Framework, ensure all activities are conducted in accordance with established policies and procedures, and contribute to a culture of continuous improvement by suggesting mitigation strategies for identified hazards or inefficiencies. 

• All staff are required to comply with Garvan’s workplace policies (as amended from time to time) and especially Garvan’s Work Health & Safety (WHS) Policy, including working in accordance with the WHS management system at all times, as safety is Garvan’s number one priority. 

ABOUT YOU 

The key skills and experience include: 

Essential criteria: 

• Degree in genetic counselling, or equivalent qualification in a relevant health or clinical science discipline. 

• Experience in participant or patient-facing roles, such as genetic counselling, clinical research coordination, or clinical trials. 

• Strong interpersonal and communication skills, with the ability to build rapport with patients, families, clinicians, and patient advocacy groups. 

• Experience with informed consent processes, ideally in the context of genomic or biobank research. 

• Experience in genetic variant interpretation, or a strong willingness to learn. 

• Ability to work independently, manage logistics across multiple participants and sites, and meet recruitment targets. 

• Familiarity with research ethics, HREC processes, and participant privacy requirements. 

Desirable criteria: 

• Experience working with rare disease communities or patient advocacy organisations. 

• Experience with participant engagement platforms, clinical databases, and biobank systems (e.g. REDCap, LIMS). 

• Proficiency in a language other than English (e.g. Mandarin, Arabic, Vietnamese, Punjabi). 

• Interest in genomic research and the application of new genomic technologies to rare disease diagnosis. 

Key Personal Attributes: 

• People-oriented: genuine interest in working with participants and families affected by rare genetic conditions, with the empathy and patience to build lasting trust. 

• Proactive: identifies recruitment opportunities and acts on them without waiting to be directed. Comfortable initiating contact with clinicians, advocacy groups, and potential participants. 

• Organised: manages logistics across multiple participants, collection sites, and timelines without letting things fall through. 

• Collaborative: works effectively across a multidisciplinary team spanning clinical, research, and operational functions. 

• Adaptable: comfortable working part-time across a nationally distributed project with evolving priorities.