Periodic Reporting for period 3 - DIME (Disruptive innovation in healthcare requires disruptive innovation in medical ethics)
Okres sprawozdawczy: 2024-02-01 do 2025-07-31
Several recent medical innovations, oftentimes based on AI and big data, do not conform with the way medicine traditionally operates, but rather blur the boundaries of medicine and/or side-line the doctor-patient relationship as an essential aspect of healthcare. Examples of this are healthcare apps, direct-to-consumer genetic testing, disease surveillance, electronic patient records, telehealth and certain types of clinical decision support systems. I postulate that several of these new innovations will fundamentally change the very concept of medicine and thus turn out to be disruptive innovations.
Given that medical ethics are tailored to ‘traditional’ medicine, we should be critical about its current ability to cope with these changes and question whether the discipline of medical ethics is sufficiently equipped to guide new, disruptive innovations in healthcare towards their great potential in terms of improving patients’ access to good quality healthcare, while also safeguarding patients/users for the risks that come with them, not only in terms of health, but also in terms of infractions against firmly rooted values such as patient autonomy, the duty of care, confidentiality or privacy. If the medical ethics toolbox is ill-equipped to deal with these challenges, we urgently need to rethink or replace procedures, principles or theories in order to remedy this problem.
DIME addresses these challenges by focusing on three main objectives:
(1) To establish where the most prominent ethical disruptions are located and therefore in which areas reorientations of ethical principles are most urgently needed.
(2) To develop normative arguments regarding which fundamental procedures, principles or theories in medical ethics ought to be reinforced, adapted or replaced in the face of disruptive innovations to better cope with the challenges ahead.
(3) To critically analyze the shifting moral responsibilities in healthcare as a consequence of disruptive innovations.
Given that medical ethics are tailored to ‘traditional’ medicine, we should be critical about its current ability to cope with these changes and question whether the discipline of medical ethics is sufficiently equipped to guide new, disruptive innovations in healthcare towards their great potential in terms of improving patients’ access to good quality healthcare, while also safeguarding patients/users for the risks that come with them, not only in terms of health, but also in terms of infractions against firmly rooted values such as patient autonomy, the duty of care, confidentiality or privacy. If the medical ethics toolbox is ill-equipped to deal with these challenges, we urgently need to rethink or replace procedures, principles or theories in order to remedy this problem.
DIME addresses these challenges by focusing on three main objectives:
(1) To establish where the most prominent ethical disruptions are located and therefore in which areas reorientations of ethical principles are most urgently needed.
(2) To develop normative arguments regarding which fundamental procedures, principles or theories in medical ethics ought to be reinforced, adapted or replaced in the face of disruptive innovations to better cope with the challenges ahead.
(3) To critically analyze the shifting moral responsibilities in healthcare as a consequence of disruptive innovations.
WP1 (concluded) was a scoping WP to find where the most prominent ethical disruptions are located and in which areas reorientation of ethical principles are most urgently needed. When submitting the grant proposal, it was hypothesized that the two main clusters would arise around (a) informed consent and confidentiality/privacy and around (b) the duty of care and professional responsibility and thus disruptions of the concepts of (a) patient autonomy and (b) ‘primum non nocere’. However, the two concepts that have acquired a prominent position in the ethics of disruptive innovation in health care are (a) empowerment and (b) trust (both closely intertwined with patient autonomy and responsibility), but also concepts such as veracity and a meta-ethical shift in medical ethics have come to our attention in the context of disruptive innovation. Several manuscripts have been published based on the research within this first WP, regarding trust (why is trusting a doctor disempowering, but trusting an mHealth tool empowering?), regarding empowerment (what does the empowerment rhetoric mean in the context of healthcare and is it truthful?), regarding the explosion of health-related responsibilities (can I be pregnant and not use a monitoring app?) and regarding the value of veracity (is it morally permissible to make patients believe that they are interacting with humans, when they are interacting with robots/AI ?)
WP2 (ongoing) focuses on developing normative arguments regarding which fundamental procedures, principles or theories in medical ethics ought to be reinforced, adapted or replaced in the face of disruptive innovations to better cope with the challenges ahead. Several manuscripts and commentaries have been published for WP2, regarding the general impact of disruptive innovation in the field of medical ethics; the difficulty of maintaining the “ought implies can” dictum in medical ethics in the face of new disruptive technologies; shifts in the goals of medicine as we are moving to preventive and participatory healthcare; the need for a "principle of explainability"; the need for data cosmopolitanism; the concept of dignity in AI ethics; the epistemological impact of AI and digital health and the risk of epistemic injustice.
WP3 focuses on shifting responsibilities from (a) physicians to patients and (b) from more specialized to less specialized healthcare providers. Several publications on the use of the empowerment rhetoric in the marketing of digital health tools have been published.
WP4 focuses on shifting responsibilities from (a) health care professionals to non-medical players and from (b) healthcare providers to data collectors. This WP is characterised by a global perspective on disruptive innovations, both in methodology, including Ubuntu philosophy, and content, focussing on impact in low
income countries.
So far, we have organized 3 workshops:
“Does disruptive innovation in healthcare require a disruption in medical ethics?” (IAB, Basel, 2022)
“Disruptive Innovation in Healthcare through mHealth: Enhancing or Endangering Personal Autonomy?” (EACME, Warsaw, 2023)
"Shifting responsibilities in healthcare due to disruptive innovation: ethical, legal, and social implications" (Brocher Foundation, Geneva, 2024)
Our research was also presented by the different team members on other academic conferences and workshops, in webinars, and to lay audiences (podcast and lectures).
In summary, the DIME project is currently on track to meet and exceed the deliverables set forward in the application for all 4 work packages. An up-to-date list of our publications can be found at dime.ugent.be/publications.
WP2 (ongoing) focuses on developing normative arguments regarding which fundamental procedures, principles or theories in medical ethics ought to be reinforced, adapted or replaced in the face of disruptive innovations to better cope with the challenges ahead. Several manuscripts and commentaries have been published for WP2, regarding the general impact of disruptive innovation in the field of medical ethics; the difficulty of maintaining the “ought implies can” dictum in medical ethics in the face of new disruptive technologies; shifts in the goals of medicine as we are moving to preventive and participatory healthcare; the need for a "principle of explainability"; the need for data cosmopolitanism; the concept of dignity in AI ethics; the epistemological impact of AI and digital health and the risk of epistemic injustice.
WP3 focuses on shifting responsibilities from (a) physicians to patients and (b) from more specialized to less specialized healthcare providers. Several publications on the use of the empowerment rhetoric in the marketing of digital health tools have been published.
WP4 focuses on shifting responsibilities from (a) health care professionals to non-medical players and from (b) healthcare providers to data collectors. This WP is characterised by a global perspective on disruptive innovations, both in methodology, including Ubuntu philosophy, and content, focussing on impact in low
income countries.
So far, we have organized 3 workshops:
“Does disruptive innovation in healthcare require a disruption in medical ethics?” (IAB, Basel, 2022)
“Disruptive Innovation in Healthcare through mHealth: Enhancing or Endangering Personal Autonomy?” (EACME, Warsaw, 2023)
"Shifting responsibilities in healthcare due to disruptive innovation: ethical, legal, and social implications" (Brocher Foundation, Geneva, 2024)
Our research was also presented by the different team members on other academic conferences and workshops, in webinars, and to lay audiences (podcast and lectures).
In summary, the DIME project is currently on track to meet and exceed the deliverables set forward in the application for all 4 work packages. An up-to-date list of our publications can be found at dime.ugent.be/publications.
While there are currently several projects on-going studying disruptive innovation in healthcare and its legal and societal impacts, the DIME project is making a distinctive contribution by fleshing out the ethical shifts in this context and focusing on the impact on medical ethics as a discipline. For example our work on how the concept of trust is mobilised in the context of new disruptive innovations, on the rhetorical use of the term ‘empowerment’, on the resurgence of metaethical questions in bioethics, on the epistemo-ethical impact of conversational artificial intelligence through the lens of epistemic injustice, and the precarity of the ought-implies-can dictum go beyond the current state of the art.
A particular strength of the team that was assembled for this project is its diversity in terms of personal and professional background and in terms of expertise on diverse ethical frameworks. More specifically, we have expanded the prototypical Western medical ethics perspective with strong African and feminist perspectives. This is allowing us to go beyond the state of the art, not only in the content of our research, but also in the normative frameworks we apply.
A particular strength of the team that was assembled for this project is its diversity in terms of personal and professional background and in terms of expertise on diverse ethical frameworks. More specifically, we have expanded the prototypical Western medical ethics perspective with strong African and feminist perspectives. This is allowing us to go beyond the state of the art, not only in the content of our research, but also in the normative frameworks we apply.