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Pan Program Meeting: The patient perspective and ethical considerations

Updated: May 11, 2020

On Friday 7 February we welcomed program staff, investigators and collaborators to London for our Annual Pan Program meeting. Here we introduce a key theme from the meeting and share what each of our speakers presented on.

The patient perspective and ethical considerations

Our final session of the meeting ensured that attendees left with a key message about the value of CGCV to patients and how they are playing a key role in the research and outcomes of the program.

Our PhD student from the University of Southampton, Kelly Kohut, firstly presented about the development of patient facing resources that will empower patients to make informed decisions around genetic testing and have improved understanding of what ‘risk’ means for them.

Kelly presented a model, Breast Cancer Choices, previously developed in collaboration with Breast Cancer Now. The platform enables younger breast cancer patients to learn at their own pace, in the depth they wish to understand and compare their options around genetic testing. Through CGCV, Kelly will be reviewing the resources available for cancer genetic testing more broadly and working with the patient and public involvement (PPI) reference panel to develop a web-based platform for patient decision making.

Chair of the PPI panel, Lesley Turner, then demonstrated the value in which the PPI panel (consisting of 6 members working across the program) and Patient Reference Panel (consisting of 10 members focusing on the above mentioned work) will have for the CGCV program.

She demonstrated how patient involvement will enable outputs to be focused on patient-owned care and shared-decision making; support understanding of the issues around communication of genetic risk to patients; and ensure all ethical concerns and issues from patients are considered.

Last, but certainly not least, Prof Nina Hallowell from the Ethox Centre at the University of Oxford explored the ethical concerns and issues in more detail.

With some of the questions arising from CGCV being: (i) what are the ethical issues raised by the development of dynamic tools such as that proposed in CGCV (ii) what does consent mean in projects like this and is the National Data Opt Out meaningful if only a minority knows it exists, and (iii) how can we foster trust and confidence in CGCV?

Nina expressed how these issues will be explored over the next four years of the program in collaboration with the wider program investigators/PPI panel and will lead to the development of a cancer genetics ethics resource.



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