Why medicine is becoming more and more personalised

Rudolphina: Barbara Prainsack, what exactly is personalised medicine?

Barbara Prainsack: In its most general form, personalisation in medicine means that diagnosis, treatment decisions and increasingly also prevention are adapted to people's individual characteristics. Some people say that medicine has always been personalised to a certain extent, because we always make a distinction between children and adults on the one hand, but also between the sexes; a 25-year-old woman suffering from abdominal pain and a 25-year-old man will be examined differently.

What has changed significantly in recent decades, however, is the fine-grained nature of personalisation. Whereas patients used to be categorised into large groups (men and women, children and adults, young and old), much more data and information are available now. Today, people suffering from lung cancer, for example, receive different therapies depending on the gene variants involved in their disease. In particular, the Human Genome Project in the late 1990s, which attempted to decode the building blocks of human DNA for the first time, has led to great changes in this regard.

Rudolphina: What has changed due to the Human Genome Project?

Barbara Prainsack: Since the Human Genome Project, we differentiate patients on the basis of genetic or molecular markers. In the early 2000s, for example, drug therapies were adapted to genetic variants that were attributed to entire groups of people. This was therefore not personalisation as part of which the genetic profiles of individual people were tested, but rather an adaptation to genetic characteristics that were particularly common in certain groups.

Rudolphina: How did they categorise these groups?

Barbara Prainsack: For example, based on ethnicity. In 2004, for example, the Food and Drug Administration in the US authorised a heart medication specifically for 'African Americans' because studies had shown that the medication was particularly effective within this group. Of course, the heart medication was not equally effective for every single individual in this group. Therefore, this attracted harsh criticism, and rightly so.

Today, precision medicine, the latest form of personalisation, uses not only genetic, genomic and other molecular markers, but also information about people's behaviour to develop treatments customised for an individual person. This culminates, for example, in the use of digital twins in cancer therapy in some cases, which involves creating a digital twin of a person on the computer in order to test certain drug therapies or surgical procedures. This is not yet standard in clinical medicine, but it is where we are heading.

Rudolphina: This is also met with some scepticism...

Barbara Prainsack: Yes, many people are bothered by the fact that these methods are based on a rather technical understanding of the body and health. They criticise that they do not sufficiently consider social, behavioural and psychological parameters. This is an area that still needs to be developed.

Rudolphina: In your view, is personalised medicine moving in the right direction?

Barbara Prainsack: Yes. But of course, this also raises questions of equality and justice. Personalised therapies based on molecular markers developed elsewhere in the world are of no use in a country that does not even have the necessary diagnostic tools or where people have no access to medical care.

But there are also injustices in the rich world. In Norway, there was the case of a man who had oesophageal cancer and paid an experimental therapy out of his own pocket. Later, he managed to obtain reimbursement of the costs of further treatment from the public healthcare system because he was able to show that this experimental treatment had improved his condition. Another person with the same condition who could not have afforded the experimental treatment in the first place would not have been able to provide this evidence at all. They would, therefore, not have been able to continue the therapy with financial support from the public healthcare system. This case shows very clearly how, even in a rich country like Norway, certain injustice effects arise because the healthcare system allows people with more money to do things that are out of reach for other people.

Rudolphina: You are also conducting specific research into the injustices of personalised medicine...

Barbara Prainsack: Exactly. I have been researching this topic for several years together with Maya Sabatello, Professor of Clinical Bioethics at Columbia University in New York, and Sara Green, Professor of Science Education in Copenhagen. Both around the world and even within individual countries, there are inequalities in medical care which cannot be justified by objective reasons. In this case, we speak of inequities, i.e. unfair inequalities. In the field of personalised medicine, these inequities already start with the people represented in research. If research is mainly carried out on people in Europe and North America, the results of this research are not easily transferable to people in other regions of the world. The same applies to gender.

We know this problem very well and many countries are taking counter-measures. For example, the Precision Medicine Initiative in the United States, the All of US initiative. This initiative does not simply take a statistical sample of the total population. Rather, marginalised groups, i.e. those who have poor or no access to healthcare, are deliberately overrepresented in its sample.

Rudolphina: In your opinion, where does Austria stand in an international comparison?

Barbara Prainsack: In terms of equity, the situation in Austria is very good compared to other countries around the world because the Austrian healthcare system is relatively inclusive and fair. I do not want to play down the concerns of those people who are affected by the consequences of the increasing problems of the Austrian healthcare system. We all know it from our own experience: It is becoming increasingly difficult to get appointments with doctors, and the waiting times for appointments with a doctor’s practice that has a health insurance fund contract are often extremely long. This is not only detrimental to those affected, but it also increases social injustice, as those who have the necessary money switch to private doctors.

Of course, all of this also impacts personalised medicine. In Austria, it is still the case that if a serious illness is suspected, it is usually treated very quickly. Nevertheless, the barriers add up for people who do not have a lot of money. In a nutshell: Compared to other countries, the situation in Austria is very good. However, the structural problems in the Austrian healthcare system are also making it more difficult to provide good and fair care for everyone.

Rudolphina: What is the status quo of personalised medicine in Austria?

Barbara Prainsack: In some areas, particularly in cancer therapy, personalised medicine is standard practice in Austria. In addition, Austrian researchers also contribute a great deal to research in the field of precision medicine, such as oncology and in the area of rare diseases.

Rudolphina: Thank you very much for the interview.