Dynamic consent in clinical genetic testing facilitates two-way communication, supporting informed patient autonomy for setting and modifying of consent preferences by patients over time, and these form the basis for dynamic downstream clinical and data management actions. It provides value to patients undergoing clinical genetic testing, healthcare professionals, organisations and broader society, yet despite benefits, its implementation and uptake is limited.
Through a literature review and semi-structured qualitative expert interviews, including with pioneering groups in dynamic consent, and supported by a survey of clinical genetics professionals on consent practices, DNV has mapped and identified six underlying categories of barriers that explain reasons for this, and discuss examples of approaches for overcoming these encountered during this work.