Head of Ethics

Genomics England

Reporting to: Chief Scientist  

Direct reports: Ethics manager

Overall job purpose: 

The Head of Ethics is responsible for ensuring that Genomics England fulfils its ethical and regulatory responsibilities. This role supports the Board and works across the organisation and its partners to provide comprehensive and aligned ethical and regulatory advice and support.

Key accountabilities:

  • Providing expert advice to the organisation on ethics, governance and regulatory issues affecting operations and policy.
  • Managing the drafting and researching of ethics policies and patient literature
  • Delivering ethics planning and projects, ensuring delivery of agreed objectives on time and budget, troubleshooting and resolution of problems.
  • Servicing the different needs of projects across the organisation in relation to ethics. This could involve being part of a project or virtual team with different levels of involvement subject to the requirements of the specific project or activity.
  • Identifying and providing consultancy advice on ethical matters across the organisation.
  • Ensuring that there is regular ethics based reporting, providing governance documents, preparing SOPs or process guidance for Genomics England or partner organisations
  • Securing ethics and governance approvals (including via REC as relevant)
  • Providing the secretariat to relevant ethics related committees
  • Ensuring appropriate and effective joint working across Genomics England teams around ethics deliverables
  • Building operational partnerships with key stakeholders, partners and individuals (in the Genomics England Advisory Committees, NHS England, NHS Genomics Medical Centres, HRA, NRES, Department of Health)
  • Providing regular progress reports for the boards and committees as needed and reporting to and supporting the Chief Scientist and the Chair of the Ethics Advisory Committee, and deputising for them as required
  • Maintaining formal and informal communications with relevant colleagues and stakeholders to support these activities
  • Fostering awareness of good ethical practices across the organisation
  • Managing a small team.

Essential skills, knowledge and behaviours required for fully effective performance in this role:

  • Experience in ethics programme and project management in a UK healthcare or research science or relevant policy environment
  • Experience in project, programme and board management
  • Understanding of relevant statute and relevant common law [1]
  • Understanding of regulatory roles and requirements in research ethics and tissue banking and data[2]
  • Understanding of relevant medico-legal guidance or recommendations[3]
  • Knowledge of ethics policies in comparable research projects and other relevant organisations[4]
  • Demonstrable ability to deliver on a diverse range of projects and to provide consultancy style advice on ethical matters.
  • Excellent written and oral communications
  • External stakeholder management and stakeholder and/or public consultation experience (including subject matter experts, MPs, academics, partner organisation representatives)
  • Ability to make independent, timely and sound decisions, whilst knowing when to consult and involve others in decision making
  • Highly organised, able to set and meet demanding deadlines, and to hold others accountable to demanding deadlines via appropriate channels
  • Use of formal project management tools and techniques, (e.g project plans, risk and issues logs, stakeholder mapping tools)
  • Strong analytical skills – able to collect, analyse and draw conclusions from qualitative and quantitative information and to present data in a clear and concise format
  • Able to grasp complex concepts in areas including research and clinical care, science and commerce, academic and professional debate in bioethics and genomics, communications and stakeholder management (including with different publics and patient groups)
  • Higher degree in medical ethics or law (or both) or equivalent experience
  • Demonstrable understanding of ethical and legal issues (and professional debates) relating to genetics/genomics, the handling and storage of human tissue and storage and access to personal and health data.
  • Motivated to have significant positive impact on strategic and detailed issues and to get involved in any task required, as well as challenging any non-essential work
  • Passionate about making a global impact on healthcare and research
  • High levels of resilience, commitment and adaptability, taking a positive and innovative approach to overcome bottlenecks and barriers.
  • Strong people management skills

[1] for example, Data Protection Act 1998, Mental Capacity Act 2005, Human Tissue Act 2004, Human Rights Act 1998.

[2] for example, Health Research Authority , Confidentiality Advisory Group, Human Tissue Authority and National Research Ethics Service and local ethics approval committees, Information Commissioner’s Office, and others.

[3] for example, from GMC (Good Medical Practice, 2013), BMA, Joint Committee on Medical Genetics, BSHG/BSGM, Health Research Authority, NRES SOPs for Research Ethics Committees, Royal College of Paediatric and Child Health, Expert Advisory Group on Data Access (EAGDA), Understanding Patient Data, publications from the National Data Guardian, Global Alliance, American College of Medical Genetics (US) and Declaration of Helsinki and others.

[4] for example: all Genomics England pilot sites, the DDD Project, PAGE study, the UK Biobank, GA4GH and others.