Developing legal, ethical and trust frameworks for clinical and public health cancer genomics.
The primary focus of WP12 is on developing legal, ethical and trust frameworks for clinical and public health cancer genomics.
With the shift towards routine genomic sequencing in healthcare and prevention contexts, there will be significant opportunities to re-use this data beyond the individual context, such as for research, the development of clinical decision support tools, or to directly inform the clinical interpretation of other patients. The evolving European legislation, governance, and infrastructure for facilitating the reuse of health data will also have significant uses in cancer genomics. Involvement of citizens and patients is also crucial for the successful integration of genetics into clinical treatment and public health. The technique will consist of reviewing data protection legislation (including case law), data governance legislation, professional and ethics guidelines, and related literature in order to identify the important legal and ethical needs for cancer genomics. We will incorporate the findings of other projects, such as the 1+ Million Genomes Project use cases in the context of cancer, as well as the legal and ethical requirements for genomic data sharing. In addition, we will collect a sample of consent forms currently in use from clinical partners in order to determine current best practices. Regarding citizen and patient perspectives, we will apply the suggestions of the following completed and ongoing citizen/patient forums to the context of cancer genomics