Study Governance

Because the Generations Study is so large and is seen as so important by both Breast Cancer Now and The Institute of Cancer Research, they have established a Management Committee (MC), which includes senior individuals from Breast Cancer Now and The Institute, who are joint legal custodians for the study and retain ultimate oversight of and decision making for the study., The Principal Investigators (PIs) report to the MC and are responsible for the design and implementation of the research strategy of the study, protection of participants’ data and materials in accordance with ICR’s responsibilities. They also provide oversight of the day-to-day operations. 

The Scientific Advisory Committee (SAC) provides scientific and strategic advice to the PIs and includes external scientific members with relevant expertise and participant representatives. Areas of advice include research priorities, efficiency of operational aspects, processes for access to data and materials from the study, and issues of commercialisation. The SAC advises the MC on the scientific value of the resource. 

An Access Committee (AC) composed by external scientists and participant representatives develops and monitors procedures for access to data and material (including cost recovery) and implements them after approval by the MC. They also evaluate and approve proposals for ancillary studies. 

The Participant Advisory Panel (PAP) is composed of participant representatives from the study and provides input and feedback on the research. Both the AC and PAP are advisory to the study PIs.