Lead Consultant Genetic Counsellor

The primary duty of the post holder will be to work with the Oxford Centre for Genomic Medicine to facilitate the offer of whole genome sequencing to eligible patients including optional contribution to the research aims of the GMS by allowing their data to be added to the National Genomics Reference Library. This will involve developing local pathways for patient contact, information dissemination and consent, supported by meticulous record keeping to ensure decisions are captured and communicated according to national guidance.

The post holder will also be expected to provide support for patients and clinicians with queries about the 100,000 Genomes Project, manage requests for patient withdrawal, and re-consent patients who have turned 16 since joining the project. The role will additionally involve engaging with clinicians to support the continued mainstreaming of genomic medicine, and working with genomic practitioners in other clinical departments to form a network across the local area, supporting training for other members of staff as required.

The ideal candidate will have an interest in, and some prior knowledge of the 100,000 Genomes Project and the national plans for mainstreaming genomic medicine, but will have access to training. The post holder will be supported by clinical leadership within the Oxford Centre for Genomic Medicine (chiefly through the genetic counselling team).

Main duties of the job

To facilitate the offer of whole genome sequencing to patients and family members including the option of contributing to the research aims of the GMS through sharing data with the National Genomic Reference Library (NGRL).

WGS Team Leader - To support the team and service with training and development and day to day management tasks., 1. To facilitate the offer of whole genome sequencing to patients and family members including the option of contributing to the research aims of the GMS through sharing data with the National Genomic Reference Library (NGRL).

2. To communicate effectively with children, adult patients, carers and families regarding this offer of participation, including the provision of ongoing information, education and support.

3. To undertake re-consenting of participants of the 100,000 Genomes Project who have turned 16 since joining the project, working with individual families to ensure specific needs are met, and ensuring consent forms are complete and accurate in line with national guidance.

4. To prepare standard letters to patients and clinicians summarising any discussions or advice as appropriate.

5. To manage and effect participant requests for withdrawal from the 100,000 Genomes Project and the NGRL.

6. To act as a central point of contact within the Oxford Centre for Genomic Medicine to answer queries from patients and clinical colleagues about the 100,000 Genomes Project, especially the process of returning results, liaising with the clinical scientists in the Oxford Genetics Laboratory as necessary.

7. To communicate intelligently and sensitively with patients who are bereaved and/or highly anxious. The post holder will use counselling skills (e.g. listening, validating, paraphrasing, normalising) to support patients/carers. The post holder will identify when a patient should be in telephone contact with a Genetic Counsellor for advanced counselling support when necessary.

8. To recognise areas of conflict when patients' demands are incompatible to professional responsibilities and resources and seek guidance and support from the Genetic Consultants and/or Lead Genetic Counsellor in how to resolve such issues.

9. To complete work in a timely fashion to facilitate the smooth running of the genetic service and enable the service to meet waiting time directives.

10. To refer on any patients that contact the department with clinical queries involving risk assessment, medical opinion, or advanced counselling support to the Genetic Consultants/Genetic Counsellors.

Operational and Networking

11. To work with local clinical teams to support the establishment of pathways for consent to genomic research for patients and families with rare disease.

12. To be aware of ethical considerations of genomics and key considerations for consent to genomic testing including the voluntary nature of participation in research such that:

a. The patient (and significant others) fully understand the nature of the research offer made;

b. The patient is aware that data sharing is voluntary and their participation in the NGRL can be withdrawn at any point without prejudice;

c. The consent form is completed accurately and filed as required.

13. To maintain accurate electronic and/or paper patient records as per standard expectations for clinical practice, and take responsibility for essential patient data entry and submission in a timely manner into patient records and other clinical systems (including Open Clinica and NGIS) as required.

14. To contribute to the development of pathways and standard operating procedures (SOPs) to support re-consenting patients who have turned 16 years of age since enrolment to the 100,000 Genomes Project, or patients who wish to discuss and potentially withdraw from the Project.

15. To maintain awareness of any updates or changes to clinical or research protocols or guidelines relating to the 100,000 Genomes Project and GMS.

16. To identify barriers to patients taking up the offer of research and work with the local team and more broadly through the WMOWGLH to identify and implement action/plans as required.

17. To participate in meetings relevant to the nature of the job, including relevant multidisciplinary team meetings.

18. To work autonomously, using initiative to identify tasks.

19. To attend and assist with the development of patient and public awareness events.

20. To maintain links with other genomic practitioners within the GMC or other GMCs and where possible to develop a network to share knowledge and to provide mutual support.

21. To work closely with the clinical lead for the project, programme lead, consultants, genetic counsellors, and any other colleagues as required in the provision to comprehensively deliver the research offer.

Administration

22. To coordinate all aspects of the delivery of the research offer, ensuring that clinic space is arranged in advance where needed, and patients and family members are advised of appointment times.

23. To ensure that clinical records are accurately maintained.

24. To ensure that clinical information is effectively archived as required.

25. To maintain records relating to reasons for decline of research involvement through the NGRL or continuing participation in 100,000 Genomes Project post-16, and for withdrawal from either of these together with other data for the purposes of audit and contribution to national information.

26. To contribute to the development of policies / procedures / standard operating procedures, showing an understanding of version control systems.

27. Work alongside the Genetic Counsellors, Specialist Registrars and Cancer Genetic Consultants to assist, where appropriate, audit of clinical genetics practice to maintain clinical governance and audit profile of department., 28. To act as a resource for colleagues in relation to the NGRL, 100,000 Genomes Project, and patient choice processes for whole genome sequencing.

29. To ensure that all information is current and shared with relevant clinical colleagues under the guidance of the clinical lead and programme lead.

30. To work with genetic counselling staff and Oxford NHS GMC Training and Education lead to develop materials for and deliver training for colleagues undertaking consent within other areas of the Trust and Local Delivery Partners.

31. To act as an educational resource both to wider health care system and to students of genomics.

32. To maintain an up-to-date knowledge of genetics and anything in particular that will benefit the role in supporting the delivery of the service.

33. To continue your own continuing professional development, keeping updated with current practice, and ensuring that your competency framework is appropriately referenced and maintained.

34. To attend national meetings in relation to the GMS as appropriate and agreed.

Other

35. To understand and adhere to Trust policies and procedures.

36. To act in accordance with the NMC Code of Professional Conduct.

37. To ensure that Trust wide standards are maintained and monitored to improve the quality of care to all those who come in contact with the service provided.

38. To maintain confidentiality at all times.

39. To ensure that the views of patients are effectively sought, channelled and acted upon. This includes efficient actioning of the complaints procedure in accordance with Trust policies and in conjunction with the clinical lead and project manager.

Oxford University Hospitals NHS Foundation Trust is one of the largest NHS teaching trusts in the country. It provides a wide range of general and specialist clinical services and is a base for medical education, training and research.

The Trust comprises of four hospitals - the John Radcliffe Hospital, Churchill Hospital and Nuffield Orthopaedic Centre in Headington and the Horton General Hospital in Banbury.

Our values, standards and behaviours define the quality of clinical care we offer and the professional relationships we make with our patients, colleagues and the wider community. We call this Delivering Compassionate Excellence and its focus is on our values of compassion, respect, learning, delivery, improvement and excellence., Oxford University Hospitals NHS Foundation Trust is one of the largest NHS teaching trusts in the country. It provides a wide range of general and specialist clinical services and is a base for medical education, training and research. Find out more here www.ouh.nhs.uk

The Trust comprises four hospitals - the John Radcliffe Hospital, Churchill Hospital and Nuffield Orthopaedic Centre in Headington and the Horton General Hospital in Banbury.

Our values, standards and behaviours define the quality of clinical care we offer and the professional relationships we make with our patients, colleagues and the wider community. We call this Delivering Compassionate Excellence and its focus is on our values of compassion, respect, learning, delivery, improvement and excellence. These values put patients at the heart of what we do and underpin the quality healthcare we would like for ourselves or a member of our family. Watch how we set out to deliver compassionate excellence via the OUH YouTube channel, Sexual Safety Charter: In 2023 NHS England launched its first sexual safety charter, and our Trust proudly signed it. We pledge zero tolerance for inappropriate sexual behaviour and commit to the ten core principles

Oxford University Hospitals promotes a safe, respectful hiring environment.

If you want to make a difference with us, come and join our team. Together, we will uphold the highest standards of care and professionalism.