Consultation 2: Pathogen Genomics – Ethics 

Session lead: Tom Connor (Cardiff University/Public Health Wales)

Following a presentation, members were asked to discuss four questions in their breakout groups, the key themes of their responses were as follows:

1)What do patients expect in terms of making use of their data for more precise public health action (e.g. as part of screening)? 

• A high degree of honesty and transparency in all communications to help build trust between the patient and those using their data. Clarity on how and when the data will be used and for what purpose, to allow for fully informed consent.
• Personal data should be accessible across the UK, however, experience suggests this is currently not the case.
• Work needs to be done to mitigate public mistrust and perceived lack on ethics in of data capture. E.g. in the form of policy to demonstrate use of data and societal benefits.
• It is important to consider how to simplify data for public consumption, e.g. during an event such as a pandemic, and how to make it relevant and useful whilst providing reassurance.
• Individual rights should also be considered, including protecting the right of individuals to withdraw.

2)What do patients expect in terms of their data use at the moment for public health (population-level) activities? 

• Target improved education to at-risk groups including examples of data usage.
• Consistent messaging is key, especially where there are differing requirements/eligibility
• Do patients have a choice in data collection and storage? Transparency is essential to manage ongoing consent for data collection/storage, especially around who can access this data and for what purpose for example, employers or insurers.

3)What understanding do patients have of ethics, and the different considerations of public health vs, say, research ethics? 

• In general, members had a good understanding of medical research ethics, but less in relation to public health. The general public may not have much knowledge of either , including usage of their data, which may inhibit their capacity to provide informed consent.
• Some members felt that the process for maintaining public health ethics could feel more trustworthy than research ethics, which could potentially be influenced (for example, by pharmaceutical companies) 
• In general, members agreed with the concept of the ‘greater good’ in using data for public health population-level activities 
• As data generation grows, more information is needed to inform patients and the public as to how much of the data goes to a central storage repository that can be used for population-scale questions
• Widely publicised examples (such as during the Covid pandemic) demonstrating how screening data is used on a broader public health basis could be used as effective tools to explain what is meant by ‘public health benefit’
• Need to consider opt-out mechanisms to be done in such a way as to avoid stigmatising people who may choose to do so
• Some members queried whether there would be any pushback from public health researchers if extra layers of ethical approvals were added.
• Must consider how we link in with UK wide initiatives such as Our Future Health. Queried how data collected by such studies could be accessed for public health benefit and what information about ethics is being disseminated when people sign up

4)What engagement and education may be required, alongside efforts to make use of routinely generated human genomic data? 

• Important to have an understanding how this would look from the patient perspective. Members felt that a large programme of comms would be required as outlined in the following points to reduce public anxieties
• Develop a broader education campaign which would aim to establish a baseline knowledge of the following areas:
• What is genomics?
• How is it used in public health?
• What safeguarding is in place to protect my data? 
• Will I be identifiable at any point? 
• How will my samples/data be stored? 
• Develop a comms plan to target particular communities/interest groups
• Both the broader and more specific comms could utilise the following tools:
• Simple information leaflets
• Public information films – videos and/or infographics (including animations) 
• Caution was expressed around use of terms such as ‘surveillance’ which could be seen as off putting due to negative socio-cultural connotations
• Whilst members acknowledged that from a clinical perspective we are reliant on large datasets, this needs to be made explicitly clear to the public. We would need to achieve a balance between collecting these large amounts of data, against the personal choice to opt out of being included in such datasets. This should include stressing the data will be used as confidentially and anonymously .