Is health a matter of negotiation?

Health is not fair. Right from the start, people have very different prerequisites for a healthy life: While most children are blessed with good health at birth, others are born with a serious genetic disorder. This affects about one in 20 babies. Rare diseases, including many of these genetic defects, are defined as those affecting fewer than five in 10,000 people. We know of over 6,000 such diseases.

From a broader perspective, they are therefore by no means rare, but affect millions of people worldwide. Understanding the genetic cause of a particular rare disease often requires years of meticulous detective work by specialised research teams. Is this effort justified in view of scarce resources? Or should research focus on diseases that affect more than just a handful of patients?

In the course of our lives, other factors come into play, many of which are distinct from our inherited predispositions. While we can influence some of these factors, such as diet or exercise, others are beyond our control: the air we breathe, the food we can afford or the quality of medical care in our region. Income, education and global challenges such as climate change determine how healthy we are, and how long we live. How far can and should we go to create the basic requirements for a healthy life for all?

In view of this conundrum of individual prerequisites and societal framework conditions that determine our health, health equity does not seem like a state that we can achieve and maintain, but rather a dynamic process. The result of this process must be negotiated through societal debates. The result is inevitably a compromise: between the ideally desirable and the practically realisable. Health is therefore a matter of negotiation.

What role can science play in this process? I would like to try to provide some answers to this question from the perspective of basic biomedical research that we conduct at the Ludwig Boltzmann Institute for Network Medicine.

How rare diseases drive research forward

Societal discussions about equity in the healthcare system require sound expertise. Our expertise can illuminate key questions about resource allocation, such as whether extensive research and costly therapies for very rare diseases are justified. In fact, it is precisely these rare, severe genetic defects that often provide completely new insights into the molecular mechanisms underlying much more common diseases. For example, research into cystic fibrosis, a rare disease in which thick mucus blocks the lungs, has also broadened our understanding of lung diseases such as asthma and chronic bronchitis.

It is particularly important to contribute our knowledge to the debate on controversial topics such as genetic engineering or artificial intelligence. In doing so, we should be self-confident, but at the same time recognise that our specialisation only covers part of the complex discussion.

Understanding complex relationships is the key to success

Many problems have no simple cause, and no simple solution either. This applies to major societal issues such as climate change or social inequality just as it does to medicine. In our research, we view diseases as the sum of many small disturbances in a complex genetic network. These disturbances result in changes in cells, tissues and organs, and ultimately in symptoms. There is no single factor causing this alone. It is the interplay of many processes that disrupts the biological balance.

Many of the major societal challenges of our time are characterised by such complex relationships, which we cannot reduce to simple causes and quick solutions. To meet these challenges, we must learn to accept and better understand their complexity.

Visions and technologies: New paths to fairer health

To make health more equitable, we must first imagine a world in which health is fair. Ideas and fantasies precede concrete steps and can lead the way towards this future characterised by health equity. Science can help to develop such visions. A core task of scientists is to think beyond what is already known and possible: to dream up new paths that may only become reality in the distant future.

Alongside science, art has always played a central role in expanding our thinking: Older readers may remember the Star Trek series, which dreamt up a holodeck back in the late 1980s, a virtual environment in which we can interact with a computer that helps us think. Younger readers may think of Tony Stark from Iron Man visualising complex data in an interactive 3D environment.

Diving into molecular networks with AI and virtual reality

What was science fiction back then is now a reality: In our laboratory, we already use technologies such as artificial intelligence and virtual reality to immerse ourselves in complex molecular networks, analyse disruptions and visualise them. One of our goals is to speed up the diagnosis of rare diseases. At the moment, more than half of all patients suffering from such a disease do not have a precise diagnosis. However, this is a prerequisite for targeted therapy. Currently, we do not have a targeted therapy for over 95 per cent of all patients suffering from a rare disease. Instead of treating the molecular causes of the disease, we only treat its symptoms. Here, too, we are trying to break new ground.

When treating rare diseases, for example, the use of drugs that are currently used for completely different diseases is particularly promising. For the pharmaceutical industry, the enormous financial effort required to develop a completely new drug is often not profitable. Basic research can help to decipher basic principles in the mode of action of drugs, which can then be used for treating many diseases.

The technologies that are available today allow us to further broaden the negotiation on health and justice and to make it more promising. Artificial intelligence, virtual reality and network theory open up new perspectives for understanding diseases better and thus being able to act more fairly. However, these tools themselves are also part of the negotiation: How we use them and who ultimately determines how fair health can really be.