Ethical AI – Perspectives from Patient Advocates: Ethics and Emerging Technology

This blog is the next in a series of 5, to discuss the results of the Ethical AI workshop at MPNE Consensus Data 2024.

Trilateral Research moderated the workshop with participation from  members of the iToBoS project (IBM, Fraunhoffer, and MPNE) along with a group of patient advocates drawn from all across Europe, as part of the wider MPNE community.

The aim was to draw on subject matter expertise from the patient advocates and to understand their perspectives concerning topics relevant to the evolving heath sector such as accountability, governance, trust, and transparency.

During the workshop, participants were divided into 4 groups. Each group was asked to discuss a cartoon depicting a different topic or theme. The cartoons were used to stimulate debate and provoke discussion in a fun, inclusive, and topical manner. The goal was to garner interesting perspectives, stories, hopes and fears, and formulate key themes that could be used to frame discussions which would be rolled into the key deliverables from WP2 concerning law, ethics and the societal impact of the iToBoS technologies.

This blog focuses on Group 1 and their perspective on the cartoon below. The cartoon suggests that some organisations’ departments such as marketing/production may prioritize compliance over ethics, and are willing to bypass protocols to achieve their goal.

While Group 1 considered their answers, the team encourage them to speak openly, honestly and truthfully in the knowledge there was no “right” or “wrong” answer, and more importantly, to speak free from judgement.

The MPNE event itself had a number of talks that were held under Chatham House rules, to promote  this honest and open discussion. Using Slido, the following 17 responses were collated from the 4 participants assigned to Group 1.

Interestingly, the word “ethics” seems to evoke thoughts of being a buzz word. Descriptions such as “Ethics theatre”, “As…….said ‘they just cover their axxxs’”, “Arse covering” and “What ethics dept?”, suggest the participants might potentially think that organisations generally participate in a process called ‘ethics-washing’. Ethics-washing is where a person or organisation uses ethics to promote themselves in a positive, transparent and trust-worthy manner, while in reality, their actions and work practices are deceiving people.

Other interpretations such as “No one cares about ethics-it’s about protectin…”, “Get it done and get to the profit part” follow similar lines of thought. Although there may have been strong undertones to potential ethics-washing within organisations, it appears the group may also envisage ethics as common sense “Prudence”.

“Proof that punishments work” suggests the group may interpret ethics as a way to punish organisations who may advertise themselves as good for humanity, society, and the future. It potentially implies whatever the organisation is trying to promote, they will ensure it is lawful even if it’s not ethically sound. This comment suggests that although organisations may be less concerned about ethics they are, at least, concerned about the law and potential for punishment due to non-compliance.

When analysing the results, it appears the group’s interpretations of the cartoon is that organisations potentially prefer legally obtained profits, to doing something that is ethically right. The group were cynical to the idea that organisations would even have a department dedicated to ethics, “What ethics dept?”.

“Boring” suggests the group might believe that organisations view ethics as a tedious hurdle that needs to be highlighted for good public relations (PR).

“Slow” implies organisations would rather rush to make something lawful, if a profit can be made, than take their time receiving guidance and feedback regarding ethical actions and decisions.

Every domain including healthcare is protected by laws. Legal requirements are essential to distinguish what is acceptable professional behaviour and what is prosecutable. However, as ethical requirements are mostly based on human beliefs of what is “right” and “wrong”, they are harder to agree on, and more difficult to enforce.

In an era where emerging technologies are being developed and exploited in healthcare, the need to implement ethic norms is more urgent than ever. These technologies can significantly impact individuals and society.

Tulchinsky and Varavikova, in their book “The New Public Health”[1] describe the key “Values and Ethical Principles of Public Health”. One such value is “Transparency - Honest and truthfulness in the manner and context in which decisions are made must be clear and accountable”. The EC-OECD STIP Compass[2] has given guidance on various methods governments can use to transparently incorporate ethics in regulations, for emerging technologies. One such method is to support public engagement such as hosting meetings and workshops and ensure that the publics’ voice and concerns are heard, and taken into account in decision-making.

The mechanism of public engagement is to encourage trust and transparency and to suggest that laws are written from an ethical viewpoint. However, even with the various promoted efforts of international organisations, the scepticism shown from the patient advocates at the workshop indicate their lack  of trust in the system. The pessimism suggests they may believe all organisations, including those related to the healthcare sector, have the potential to choose legal profits over ethical behaviour.

We can only presume the perspectives of the patient advocates shared at MPNE consensus Data 2024 are true and sincere. Therefore, genuine demonstrations of trust, transparency and accountability from organisations will be crucial, if the public is to potentially believe in their ethical values.


More at Ethical AI workshop at MPNE Consensus Data 2024.

[1] Theodore H. Tulchinsky and Elena A. Varavikova, ‘Health Technology, Quality, Law, and Ethics’, in The New Public Health (Elsevier, 2014), 771–819,

[2] ‘Ethics of Emerging Technologies’, n.d.,