The Ethics Blog

A research blog from the Centre for Resarch Ethics & Bioethics (CRB)

Month: September 2026

Health data infrastructures require more continuous governance

29 September, 2026 / / 1 Comment

Health data holds great value for research and development, even long after it was originally collected. It can shed light on questions beyond those that initially motivated the collection. Therefore, data infrastructures are being established to store health data for long periods of time. Biobanks and registries keep samples and data available for researchers who apply to use them to investigate new questions. This long-term sharing of research participants’ health data places high demands on data security and oversight. Researchers applying for data access undergo rigorous review and must sign detailed agreements.

But what can happen to participants’ health data after a biobank or registry approves the researchers’ application and transfers the data to them? In the spring of 2026, it was discovered that health data from UK Biobank was being offered for sale on overseas commercial online platforms. The participants’ data had already been de-identified, and the sales offer was immediately removed from the platforms once discovered. While it is unlikely that anyone was harmed by the incident, it highlights a vulnerability in the system.

In an article, Yusuke Inoue (formerly a visiting researcher at CRB) and Jennifer Viberg Johansson discuss this incident as an illustration of the need for more long-term responsibility regarding participants’ health data. Carefully reviewing the researchers’ application prior to granting data access is not enough. The authors argue that responsibility for participants’ health data should encompass the data’s entire lifecycle: before, during, and after access.

Yusuke Inoue and Jennifer Viberg Johansson call this continuous governance of health data infrastructures – but what does that entail? It implies, among other things, that the committees deciding on data access have a responsibility that extends beyond the initial decision. There must be mechanisms to continuously ensure that data accessed by researchers is handled correctly throughout the period of use, and to intervene if problematic handling of the data is detected. The authors argue that these mechanisms should be proportionate to the risks involved, to ensure that continuous governance does not unnecessarily impede responsible research or routine, low-risk data usage.

Shared health-related data may cross numerous boundaries during its lifecycle and may also be utilized by commercial entities. Continuous governance therefore entails responsibility for how data is shared following the decision on access, and how it is handled by parties other than the institution originally granted access. The authors emphasize that commercial use of health data is not inherently problematic; on the contrary, it is a prerequisite for translating medical research into innovations that benefit patients. Yet, continuous governance involves a responsibility to ensure that unauthorized onward transfer of data does not occur and that data is used in accordance with the conditions and purposes expected by both participants and society at large.

Health data infrastructures are not merely technical systems, the authors write. They are public institutions that cease to function if people lose trust in them and are no longer willing to contribute their data. A crucial aspect of continuous governance is, therefore, ongoing public communication regarding how participants’ health data is transferred and used after access has been granted, as well as the risks that may arise at later stages of the health data lifecycle. It is also important to act quickly and openly when problematic data usage is discovered – which is precisely what was done when it was discovered that health data from UK Biobank was being offered for sale.

The aim of Yusuke Inoue and Jennifer Viberg Johansson’s proposal for continuous governance is not to make sharing health data more difficult, but to make it easier to do the right thing, ensuring that incidents like the one involving UK Biobank do not happen again.

Read their arguments for continuous governance here: Ethics of Health Data Infrastructures: Toward Continuous Governance and Public Trust.

Pär Segerdahl

Written by…

Pär Segerdahl, Associate Professor at the Centre for Research Ethics & Bioethics and editor of the Ethics Blog.

Inoue Y, Viberg Johansson J. Ethics of Health Data Infrastructures: Toward Continuous Governance and Public Trust. Journal of Medical Internet Research, 2026, doi: 10.2196/104402

This post in Swedish

Approaching future issues

The demand for knowledge and the love of wisdom

Socrates image by fszalai on Pixabay
15 September, 2026 / / 0 Comments

When we talk about norms, we often overlook a higher norm in human interaction. I am thinking of the norm of having knowledge, the demand to know. Why do I say that knowledge is a higher norm? Because norms presuppose our knowledge of them. If we did not know which norms apply, they would lie by the wayside. They would lie in the ditch, and the wrong norms would guide us along the way. Being a good parent, for example, presupposes that we are acquainted with the norms of good parenting and understand what they require of us. We seem to live under this higher demand for knowledge of applicable norms. How ashamed we feel when we are ignorant of what applies and everyone else seems to know.

If the norm of knowledge permeates human interaction, it can also characterize our unconscious role play in the various situations of life. We do not notice how our gestures, tone of voice and behavior are often involuntarily governed by the superior demand to know what applies. The higher demand for knowledge, which should keep us on the right track, can paradoxically lead us into the labyrinths of lies. The fear and shame of not knowing is so intolerable that we instinctively flee from our ignorance by presenting a confident façade. Not least before ourselves. We imagine that we know what we do not know, and mere assumptions become firm convictions. The demand for knowledge thus gives rise to its opposite, it creates shadow worlds that we take for reality.

Philosophy is usually explained as the love of wisdom. Perhaps one could say that this love, ever since the days of Plato, has expressed itself in the fact that philosophers have always taken the norm of knowledge particularly seriously. In this post, I want to point out how this seriousness invites two possible philosophical tasks, which complement each other. An obvious task, which directly corresponds to the norm, is of course to critically examine how we live up to the norm of knowledge. False and unfounded claims to knowledge are identified and replaced by more well-considered ones. This philosophical task also includes developing a systematic knowledge-seeking approach that more rigorously takes us closer to the norm.

This philosophical task is not simple, however, because it is unclear how the norm of knowledge should be interpreted. What is knowledge? What does it mean to have knowledge about plant and animal life or about statesmanship and society? What does it mean to have knowledge about right and wrong or about beauty and ugliness? Ever since the days of Plato, philosophers have disagreed about what it means to live up to the norm of knowledge, and they have discussed which knowledge-seeking approach best ensures that we approach the norm rather than move away from it. Philosophical schools have criticized each other as ignorant of what knowledge is, and thus ignorant of how best to seek knowledge. So, while philosophers do indeed often identify false claims and provide good reasons for more well-considered positions, philosophy hardly functions as a higher court that authoritatively sorts out human disagreements about true and false, right and wrong. It often exhibits the same kind of human disagreements that it feels a responsibility to sort out in a systematic way. Philosophers have sometimes experienced their recurring disagreements as something of a scandal in philosophy and as a crisis for all of humanity. How is knowledge possible if even philosophy fails to live up to the superior norm that it takes so seriously?

But as I said, the norm of knowledge also invites another possible philosophical task, which complements the former. The second task is to confront the dark side of the norm of knowledge by examining how the demand for knowledge also generates shadow worlds. For like all norms, the higher norm of knowledge tends to generate its opposite. The expectation placed on us to know what applies triggers an increasingly rapid reflex to hide our uncertainty behind a confident façade. This unnoticed reflex becomes an unconscious habit. It feels so uncomfortable to stand there with empty knowledge gaps, that we routinely fill the gaps with perceptions about all sorts of things that we do not really know much about. The theme has been touched on in a previous post: Health information when knowledge gaps are already filled. The post was about the difficulty of reaching out with new health information when our knowledge gaps are paradoxically not empty but filled with perceptions that oppose the information.

The second task of philosophy – to draw attention to the dark side of the norm of knowledge – means that we open ourselves to our own uncertainty. We do not give in to the flight response that the knowledge norm activates when we feel the discomfort of uncertainty. We do not hide behind a façade but admit honestly and humbly: I don’t know. Instead of giving the appearance that we live up to the norm, we find ourselves at the absolute zero point of knowledge claims. Only from this lowest point can we freely examine how the higher norm generates shadow worlds in our ways of thinking, speaking, and living. This task is not easy either. Anyone who lives in a shadow world is unaware of the fact that it is only a shadow world, since the shadows have become the archetype of reality. The philosophical task of elucidating how these shadows arise and are assigned the lead role as the archetype of reality thus requires a certain freedom from the norm of knowledge. Merely tightening the requirements of the norm provides dubious protection against our resistance to facts, since the norm itself tends to generate the shadow pictures that it was intended to exclude. Therefore, the humbler task of philosophy is to illuminate how the knowledge norm generates shadow worlds within us.

In conclusion, I would like to say that philosophy – the love of wisdom – has two complementary tasks. If we do not pay attention to the dark side of the norm of knowledge, there is a risk that the emphasis on the bright side will lure us back into the shadows. The love of wisdom is greater than the demand for knowledge. Without condemning or shaming, the love of wisdom illuminates the dark side of the norm of knowledge – so that we can finally say, with Socrates: “when I don’t know things, I don’t think that I do either.”

Pär Segerdahl

Written by…

Pär Segerdahl, Associate Professor at the Centre for Research Ethics & Bioethics and editor of the Ethics Blog.

This post in Swedish

Thinking about thinking

AI systems are only as good as the procurements that select them

physician at computer
1 September, 2026 / / 1 Comment

Just over two years ago, I experienced what a healthcare procurement process can mean in practice. At the time, I was working for a company in the field of orthotics and prosthetics, and when the procurement contract was lost, the conditions for our business changed from one day to the next. The experience led me to a realization: procurement is not only about law, processes, and economics. It also determines which products, which services, and ultimately which care patients gain access to.

Public procurement serves an important function. It should be legally secure, transparent, and give all suppliers the opportunity to compete on equal terms. However, if too much emphasis is placed on price alone, there is a risk that other values will be overshadowed. In healthcare, this can have consequences for the quality of the tools used in patient care. Procurement needs to balance different values against one another, including values that are not always easy to measure.

This was one of the starting points for a recent article that my research colleague Santa Slokenberga and I published. In the article, we examine how European legislation can contribute to more balanced healthcare procurements, procurements that do not risk overemphasising certain values, such as price, at the expense of other important considerations, such as quality and safety. The article focuses on the procurement of AI systems, but many of our conclusions are more broadly applicable.

We explore the interaction between three key European legal frameworks: the Artificial Intelligence Act (AIA), the Medical Device Regulation (MDR), and the Public Procurement Directive (PPD). Using Donabedian’s model of healthcare quality, we analyse how these legal frameworks contribute to quality in terms of healthcare structures, processes, and outcomes.

Our conclusion regarding AI systems is that the AIA and MDR contain important requirements related to areas such as safety, transparency, documentation, risk management, and post-market monitoring. However, legislation alone is not enough to ensure that AI actually contributes to better care for patients. These requirements only acquire real significance when they are translated into practice, and procurement can play an important role in this respect. We argue that procurement processes which take the requirements of the AIA and MDR into account can create favourable conditions for high-quality healthcare. Through procurement, healthcare providers can set requirements that go beyond CE marking and formal regulatory compliance. This may include requesting evidence of clinical benefit, requirements concerning diagnostic accuracy, follow-up of patient outcomes, transparency about how systems have been developed, and how they perform in the environment in which they are intended to be used. In other words, procurement that takes these two regulations into account can serve as a tool for translating legal requirements into actual quality of care.

An important message of the article is that procurement processes cannot be isolated from clinical reality. Procurement professionals need support from clinicians, patients, technical experts, and other relevant stakeholders to formulate meaningful quality requirements. If healthcare is to benefit from AI, those who meet patients must be involved in defining what quality actually means. AI should be implemented not simply because there are political, clinical, or public expectations that everything will improve with AI, but only when the procured AI system genuinely addresses clearly identified needs in accordance with relevant requirements.

Technology is developing rapidly and offers significant opportunities. But technology should not set the agenda. It is we, as humans, who must define the framework, establish the requirements, and determine which solutions deserve a place in healthcare. Only then can AI become a tool that strengthens, rather than steers, the future of healthcare.

If you would like to read more, you can find our article here: A Pathway from Law to Care: How the Artificial Intelligence Act, the Medical Device Regulation, and the Public Procurement Directive Can Contribute to Ensuring Quality in Healthcare.

Many of our conclusions regarding the procurement of AI systems can be generalised. Procurement that takes seriously the task of balancing different values against one another, in accordance with relevant legal requirements, can provide a concrete pathway to both cost-effective and high-quality healthcare.

Written by…

Jennifer Viberg Johansson, who is an Associate Professor in Medical Ethics at the Centre for Research Ethics & Bioethics.

Viberg Johansson, J., Slokenberga, S. A Pathway from Law to Care: How the Artificial Intelligence Act, the Medical Device Regulation, and the Public Procurement Directive Can Contribute to Ensuring Quality in Healthcare. Health Care Analysis (2026). https://doi.org/10.1007/s10728-026-00588-9

This post in Swedish

Approaching future issues